But then his Chair asked him a question he couldn’t answer: “How do you know?”

Kitts realized that he couldn’t answer, because while he felt that The Ottawa Hospital was staffed by excellent, dedicated doctors and nurses, the hospital wasn’t systematically measuring its quality of care.

And The Ottawa Hospital was not alone – ten years ago, few Canadian hospitals measured quality of care, and there was limited measurement of health system performance (including primary care, home care or long term care).

A decade later, progress has been made. At the provincial level, health systems report publicly on wait times and some quality measures. Hospital quality is also measured and reported by the Canadian Institute for Health Information (CIHI). Yet there are still large gaps in what is measured in our health care system, and much of what is measured is only useful to top-level system managers, not to the front-line clinicians whose day-to-day work is so important to the overall quality of the system. This leads experts to question whether measurement is being used effectively to improve the quality of Canadian health care.

Little standardization in measurement across health systems

In Ontario, the Ministry of Health and Long Term Care now publicly reports wait times for emergency departments, MRI/CT scans and some surgeries. However, much of this wait time data is incomplete since it does not include wait times to see specialists.

Information on health system performance is monitored by Health Quality Ontario (HQO). HQO’s annual Quality Monitor reports on a range of measurements for hospitals, primary care, home care and long term care.

HQO reports dozens of metrics, including measures of wait times, adverse events and patient satisfaction. While some of the measures are reported every year – such as the proportion of home care patients with pain that is not well controlled – other measures vary from year to year – such as the rate of deep vein thrombosis after surgery, which was reported in 2010 but not in 2012.

While HQO’s quality monitor provides a snapshot of health system performance, the most recent report acknowledges it has “major gaps.” According to the report, “in some cases, the data [on quality] exist but are inaccurate or difficult to access, while in other cases, there are no data at all.”

Alberta Health Services (AHS), the authority responsible for administrating Alberta’s health care system, publicly reports 55 performance metrics. These include such different measures as life expectancy, childhood immunization rates, workforce absenteeism, wait times, adherence to budgeting and patient satisfaction.

AHS reports these performance metrics quarterly, and has been reporting on the same measures since 2010.

In addition to AHS’s reporting on the health care system, Alberta’s ministry of health (Alberta Health) also publicly reports on health care utilization and population health.

Transparency alone not enough to drive quality improvement

There is no doubt that reporting health system performance measurements on the web can make a health care system more transparent (assuming the measurements are accurate). However, there is limited evidence to date that public reporting – at least in its current form – is contributing to meaningful improvement.

Kitts believes strongly in the power of transparency. “Unless you can compare yourself to others and benchmark against best practice, quality improvement is very slow going,” he says. But he acknowledges that transparency alone is not enough to drive quality improvement.

Transparency may be ineffective at driving quality improvement if the information being publicly reported isn’t accurate. “With something like CIHI’s report on hospital quality, doctors and nurses are very concerned that the data is old and that the comparisons aren’t ‘apples to apples’ – because everyone is reporting the data differently,” Kitts says. This certainly appears to be true of some quality indicators, such as hand washing, where there are large discrepancies between the rates of hand washing reported by some hospitals versus the rates observed by researchers.

Kitts’ concern is that questions of accuracy can be used as an excuse to not focus on quality improvement. “We have to take this away,” he says. “We have to get health professionals to take quality data seriously.”

This means more effort must be made to ensure quality data is reported the same way by hospitals and other health care facilities.

Measuring what matters

Cy Frank, CEO of Alberta Innovates Health Solutions and Chief Medical Officer of the Alberta Bone and Joint Institute, believes part of the gap between measurement and quality improvement is due to relying too much on “administrative data” rather than doing the hard work of measuring quality directly. “You need good data to make good decisions,” says Frank, “if you use data that was generated for other purposes, to track billing for example, you’re not getting good data about quality.”

Stafford Dean, Vice President of Data Integration Measurement and Reporting for AHS, agrees. “We’ve been really successful at making the system a lot more transparent – and that’s great. Now we need to focus on making sure that we’re measuring the right things to really drive quality improvement.”

Frank believes a key part of good quality measurement is not to rely on a single metric or focus on one part of a continuum of care. “Focusing on one thing can have perverse effects,” he says. “If you measure only one part of a continuum of care, the system will find ways of pushing patients out of that part of the continuum. You have to have continuum approaches, multiple data sources, multiple metrics and timely analysis.”

Tom Briggs, Vice President of Health System Priorities for AHS has a similar perspective. “What you report publicly tends to determine what the system focuses on improving, and we want to focus on the real game-changers.”

For Briggs, many of these “game-changers” lie beyond the “big-dot” measures of health system performance.

Measurement from the “bottom up”

Briggs thinks one of the keys to using measurement to drive quality improvement is to provide clinical staff with data that is relevant to them. “There’s not much a front-line practitioner can do to move a ‘big-dot’ measure of health system performance,” he says.

Instead, he believes clinicians need a finer-grained level of data that helps them identify how they can improve their practices. “If clinicians throughout the system are using their own data to improve on the quality in their own practices, that’s what’s going to move the big measures of overall system performance.”

“Most of the measures we have in Canada right now are top down,” says Dean, “but to improve quality on the front lines, we also need measurement from the bottom up – we need a whole layer of clinically-relevant measurement underneath the big health system performance measures.”

Alberta has already had some experience using data in this way. For the last eight years, Alberta Bone and Joint Institute has collected information on quality of care, including patient reported outcomes, and provided it directly to both providers and administrators.

“The key,” says Frank “is packaging. We analyze and package the data in a way that is useful to clinicians that can help them improve their care.” He stresses that this information isn’t used for reward or punishment, but to help identify opportunities to improve outcomes.

Dean hopes to use the work of the institute as a model for the rest of Alberta. He believes clinicians are eager for this kind of information, saying “I’ve seen a shift in the attitude of doctors over the last ten years –they want to know their performance, they want to know things like whether their patients are winding up back in the emergency department after they’ve seen them.”

Dean doesn’t see “bottom-up” measurement as a replacement for public reporting of high-level system performance. Rather, he thinks that measurement at all levels of the health care system (not just the top) will allow measurement drive quality improvement.

Frank, Dean and Briggs all acknowledge that it has yet to be proven that a “bottom-up” approach to measurement can work on a provincial scale. However, they’re hopeful that Alberta is on track to use measurement to drive performance at all levels of the health care system.

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The Question: My wife has colon cancer that has metastasized to her liver. She has been receiving cancer treatments in Winnipeg since June 2012. I understand from Biocompatibles Inc. that Ontario hospitals may offer Debiri treatments with respect to the liver. I would be grateful if you could let me know if these treatments are available and how I might be able to access them. Thank you very much for your assistance.

The Answer: I am sorry to hear that your wife’s colorectal cancer has spread. And I can understand why you are looking at different options outside of standard chemotherapy. Sunnybrook has been offering the DEBIRI treatment (intra-arterial infusion of irinotecan-loaded drug-eluting beads) for about two years and while it extends survival significantly, it is not a cure. On average, the Sunnybrook team performs this procedure once or twice a month.

Eligible patients are those with cancer that has spread to the liver that is not surgically operable and has not responded to at least two standard systemic chemotherapy drugs. Typically, these patients have diffuse tumours on their liver – sometimes in a rain shower pattern – making surgical removal impossible.

With DEBIRI, also known as liver chemoembolization, beads are threaded through a small catheter line from the blood vessel into the artery, located in the groin, that supplies blood to the liver. These tiny beads contain a very highly concentrated dose of the chemotherapy drug irinotecan. With this treatment, the blood vessels are partly blocked with the beads, starving the tumor of its blood supply, while concentrating chemotherapy in high doses to the tumours. This devastating “one-two punch” slows, and in some cases, even halts tumor growth.

A small, single institution phase III of a clinical trial of 74 patients randomly assigned to receive DEBIRI (36) versus systemic irinotecan, fluorouracil and leucovorin (FOLFIRI, 38), found a survival advantage for patients who use the treatment, compared to those who use standard intravenous therapy, according to a 2012 study published in the journal, Anticancer Research. The study, while limited, demonstrates the potential DEBIRI has in the treatment of metastatic colorectal cancer.

“It is hard for me to say whether she is a candidate or not without more details,” said Calvin Law, head of the cancer surgery program at Sunnybrook. “We really think that DEBIRI should be examined on a case-by-case basis.”

A team that includes a radiologist, medical oncologist, radiation oncologist and surgical oncologist select what patients would benefit from the treatment.

“If we all agree,” said Dr. Law, “then the interventional radiologist will look at the picture and tell us if they can put the beads in the right place.”

If the treatment is recommended, it takes place in two sessions, usually weeks apart. Each time, the patient is in hospital for two nights and three days. Return to work is widely variable – from as low to a week to a month or longer.

“Typically, there is more than one treatment and occasionally, there are more than three treatments,” said Dr. Law.

Having said all that, the main issue may be whether the Manitoba provincial health plan will pay for the treatment. Generally speaking, medical treatment will be funded from one province to the next, as part of the Canada Health Act, which provides equal access to medical care. However, this may be a little different: critical to the funding will be whether DEBIRI s considered the standard of care in your province. You will also need to get your wife’s oncologist on side with the approach, as she will undoubtedly need to recommend it.

To that end, I would suggest your wife’s oncologist contact Dr. Law, who said he would be happy to discuss the treatment.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Babies would no longer be delivered in Banff (population about 8,200) and instead obstetrical care would be “consolidated” at the Canmore General Hospital, located in the slightly larger town of Canmore (population 12,000), 22 kms east on the TransCanada highway.

With the departure of obstetrics, the Mountain Springs Hospital, located in the scenic town inside Banff National Park, would increase its capacity for joint repair and cosmetic plastic surgery for Canadians and foreign tourists.

Alberta Health Services and Covenant Health, “Canada’s largest Catholic Health Provider”, produced the planning document, but did not count on opposition from the Banff community. (Covenant operates the Mountain Springs Hospital, but not the Canmore General Hospital.)

The proposed change sparked a “Save the Banff Maternity Ward” movement early this year, protests were held in the community, and supporters of keeping birth in Banff even illustrated their concern with a humorous YouTube video.

But at the end of March 2013, the closure went ahead as planned and the maternity ward at Banff’s Mineral Spring Hospital was shuttered. The closure is the subject of an upcoming judicial review.

In some respects the Banff/Canmore story is unusual because services for local residents are being replaced by elective surgery, including privately paid non-medically necessary cosmetic procedures that are pitched, in part, towards nonresidents and non-Canadians. (Recognizing a business opportunity, local hotels provide discounts to plastic surgery clients.)

Maternity ward closures have wide-ranging effects

But the closure also fits into a larger trend. Across Canada, the number of hospital maternity wards in small towns has been steadily declining. The closures of these wards have wide ranging effects—on the safety of deliveries, the out-of-pocket expenses families must shoulder, the attractiveness of a community to young couples and the retention of physicians (such as general surgeons, anaesthetists and those interested in a broad range of practice) in smaller hospitals.

Maternity services in 20 British Columbia hospitals closed since 2000, according to research published in 2009 in the journal Health Policy.

In Ontario, five hospitals have ceased offering obstetrical services  since 2011, according to BORN Ontario. An earlier study (1999) revealed a similar trend in northern Ontario: of 55 general hospitals surveyed, the number not offering obstetrical services increased by 500% from 1981, states the study by Peter Hutten-Czapski.

And according to information published on the Public Health Agency of Canada website in 2009, 25.6% of women travelled to another city, town or community to give birth, and overall 2.5% of women travelled more than 100 kms to give birth.

No “robust evidence base” for closing rural & small town maternity wards

“There’s been a steady erosion” of locally available maternity services, says Stefan Grzybowski, the lead author of the Health Policy article and co-director of the centre for rural health research at the University of British Columbia.

But the article states that there’s no systematic approach to rural health service planning, and no “robust evidence base” for closing maternity wards.

And in an interview, Grzybowksi adds that maternity ward closures are often “the canary in the coal mine” that triggers the loss of other services—such as general surgery, anaesthesia, and emergency services— in smaller hospitals.  All those services are intricately connected, and so he also notes that the loss of any one of them can create a domino effect.

“Efficiencies of scale” is a mantra in health care planning these days, and nationwide there’s been a push to regionalize and centralize certain health care services, especially surgical procedures. The rationale is that more expertise, quality and safety are to be had with a higher volume of procedures such as trauma care and some cancer surgeries.

Evidence for a link between quality and volume in obstetrics is much more limited. There is some international evidence that suggests relatively low volume of deliveries at a hospital can be a safety concern.  However, there is also Canadian evidence that suggests that there is no relationship between a family physician’s delivery volume and adverse outcomes, although this research has not yet been replicated in rural settings. In any event, volume alone does not determine the safety of obstetrical services. Distance also matters.

Travelling to give birth increases the risk of “adverse perinatal outcomes”

Grzybowski and many who work in rural maternity care say that unlike trauma or cancer care, it is not “safer” to close local, functioning maternity wards so that woman have to travel to give birth.

Instead, women in labour who have to travel to access maternity care “have increased rates of adverse perinatal outcomes,” concludes “Distance Matters: A population based study examining access to maternity services for rural women,” another study co-authored by Grzybowski.

Depending on how far women live from maternity care services, they can experience either more unplanned out-of-hospital deliveries, or more inductions (when uterine contractions are artificially stimulated before labour beings on its own), the study found.

Importantly, it is the most “socioeconomically vulnerable” women and families who have the most difficulty mobilizing the resources to travel to a referral centre, the study notes.

Where you give birth, where you die: both have sacred meaning in people’s lives

Even when the distance from one’s home town to a centre with a maternity ward is not a great distance, the fact is that people are “philosophically tied to a sense of place,” says Sarah Newbery, a family physician in Marathon Ontario.

“Obstetrics and palliative care—where you birth and where you are allowed to die—are sacred in terms of their meaning in people’s lives.”

Newbery was one of six doctors who came to practice in Marathon in 1996. The group made their move to the town of less than 4,000 “contingent on the [hospital] board re-opening the obstetrical unit,” she says.

The maternity ward at the Wilson Memorial General Hospital had been closed for the previous two years because of a doctor shortage. The re-opening was noteworthy as it was the only maternity ward to re-open in many years. “We were a significant blip in the downhill slide,” Newbery observes.

Marathon is located on the north shore of Lake Superior between Sault Ste Marie and Thunder Bay. The closer of the two cities is Thunder Bay, a three to four hour drive away.

There’s no obstetrician in Marathon, so the hospital offers only low risk obstetrical services. Women are carefully assessed and those who aren’t deemed low risk—about 50% of pregnant women, for conditions including hypertension, diabetes, and opiate abuse—have no choice but to leave Marathon to deliver, usually at about 37 or 38 weeks, Newbery explains.

Families must shoulder the financial burden when they have to travel to larger centre to give birth

While northern Ontario residents are reimbursed for travel to get to medical care, only one night of accommodation is covered, which means women and their families face a considerable financial burden when they have to leave their home community to deliver, she notes.

Women who are deemed low risk go through a detailed informed consent process and about 90% of those who are eligible to stay decide to deliver in Marathon, she says. (The number of women delivering in Marathon has ranged from 19 to 40 per year over the past few years.)

A published study of pregnant women’s decision making in Marathon found that being close to home where it’s easy to have coaches and partners be present “are of prime importance in the decision.”

When obstetrical services are eliminated, it’s difficult to revive them

Newbery notes that she and her colleagues have also had to attend deliveries, deemed high risk, but where women were not able to leave Marathon because of bad weather or because the women went into labour early.

Researchers stress that once obstetrical services are closed, it’s very difficult to revive them.

Jane Fowke enjoys delivering her patients’ babies, but isn’t sure how long she’ll keep at it now that she can long longer attend her Banff patients in their home town and has to travel to Canmore, where she has hospital privileges.

“I’m happy being on call . . . but obviously, I’m not going to go up and down the road forever,” says the 56-year-old family physician who has been delivering more than 50 babies a year.

Total deliveries in Banff had exceeded 100 a year in 2010 and 2011, but last year the number dropped to 51, primarily because the other family physician who attended deliveries moved away.

Obstetrics a “core, essential service for a community”

No questions were ever raised about the safety of Fowke’s practice and obstetrical nurses at the hospital had maintained their qualifications.

Fowke says she was never consulted about the closure of obstetrical services in Banff.  While the AHS and Covenant Health refer to a community consultation being part of the planning, background documents of that meeting, attended by 11 people identified as “community members”, indicated that the consolidation of obstetrical services was not a prominent item being considered.

“Once I stop, there will be no one to do obstetrics,” in Banff, says Fowke, noting that this is a problem because not all babies arrive as planned and on schedule. “I think obstetrics are a core, essential service for a community hospital…and hospitals are more lively when there are births as well as deaths.”

Please join us on May 21st at 2pm (ET), 12pm (MT) for a live web chat with medical experts and Healthy Debate editors about whether it is time to reverse the trend of centralizing obstetrical services.

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The Question: I have recently been diagnosed with uterine cancer and have been told it is a “high grade.” I was referred to a surgical oncologist two weeks ago. She has scheduled my surgery and I had the pre–op visit. I know that I am in good hands and I thank God for the caring and wonderful personnel I have already met. At this point, I only have one question: I was told that the pathology report could take up to four weeks after the operation to stage the cancer? Is this correct?

The Answer: I am glad to hear a diagnosis is made, an operation booked and you are in the cancer care system. As you know, the early pathology work you already had done – a biopsy – led to a definitive diagnosis of uterine cancer. Now you are waiting for the second part of your pathology to take place, which will tell you, among other things, the size, grade and invasiveness of the tumour. Only after the pathology report can oncologists develop a treatment plan. The pathology and the treatment plan are usually provided after you have healed from surgery – three to four weeks after your operation.

“We make sure by the time the patient comes (for a post operative visit), this report will be available to the physician so an intelligent decision can be made about treatment,” said Mahmoud Khalifa, who is joint chief of anatomic pathology at Sunnybrook Health Sciences Centre and University Health Network.

At Sunnybrook, patients are booked to receive the results of their pathology report at the same time as their treatment plan – about three to four weeks after surgery. This is done deliberately: oncologists want to ensure that when patients learn the stage of their cancer, they also hear the plan to treat it. You can imagine how anxiety provoking it would be to only hear you have advanced cancer, but not to have a plan.

“What we don’t want is for a patient to come for follow up and the pathology is not available,” Dr. Khalifa said in an interview. “These patients know they have cancer. The only question is whether they are going to need further treatment.”

Now, as a cancer patient, you raise an interesting question about whether the pathology report could be provided sooner. In a public health care system, there is a fixed amount of funding and so administrators have to determine where best to spend it. Ultimately, it comes down to determining whether spending would change the treatment plan – or patient outcome.

“Patients really want to know whether they have cancer or not. There is an element of anxiety so we need to get this news out as soon as possible,” said Dr. Khalifa, whose department at Sunnybrook sees 70,000 cases a year, about three-quarters involving cancer diagnoses.

For example, a significant amount of funding is poured into pathology at the front end – typically making the initial diagnosis of cancer in the form of a biopsy result. In addition, anything that would change the treatment outcome is also fast-tracked. But in cases where earlier knowledge would not translate into different care or compromise an outcome, it is timed to take place when the adjuvant treatment – chemotherapy and radiation – would potentially start, if even needed, which is your case.

As you know, cancer has four stages, with the first one being the earliest and stage four being the most advanced, having metastasized or spread to other organs. With uterine cancer, there are early, obvious symptoms such as bleeding, which make earlier diagnosis more likely than say, ovarian cancer where the symptoms can benon-specific.

If the uterine tumor has deeply penetrated the uterine wall, patients may need radiation treatment. If the tumor has invaded the lymph nodes, patients may require chemotherapy, according to Dr. Khalifa, professor at University’s Department of Laboratory Medicine and Pathobiology. Sometimes patients require both forms of treatment.

So, in answer to your question, you will receive the results of your pathology plus your adjuvant treatment plan at your scheduled appointment after surgery. I wish you all the best.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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The government watchdogs have scrutinized the value that Canadians have received from the hundreds of millions of dollars expended on the Canadian Diabetes Strategy and the Ontario Diabetes Strategy.

As diabetes rates in Canada continue on a steady and alarming uphill climb, the auditors reports conclude that both strategies have come up seriously wanting.

The prevalence of diabetes among Canadians increased by 70% in one decade (1999 to 2009), with an estimated 2.4-million Canadians (6.8% of the population) now suffering from the chronic, and often preventable, condition, according to the federal report, which was released at the end of last month.

In Ontario alone, it’s estimated that the number of people with diabetes will reach 1.9-million by 2020, up from the 1.2-million in 2010 and 546,000 in 2000, 1.2-million people, according to the December 2012 report from the Auditor General of Ontario.

How important is it to have a comprehensive strategy?

The burden of illness linked with diabetes is alarming

The burden of illness associated with diabetes is alarming. In Ontario, for example, people with diabetes account for 69% of limb amputations, 53% of kidney dialysis, 39% of heart attacks and 35% of strokes, according to the Ontario report.

On average, medical expenses for diabetics are two times that of the rest of the population, the report notes, and mortality rates are twice that of people without diabetes.

Ontario is one of three provinces with the highest age-standardized prevalence rates of diabetes (the two others are Newfoundland and Labrador, and Nova Scotia), while Alberta (along with Nunavut and Quebec) had the lowest such rates, according to the Public Health Agency of Canada.

Despite this difference, Alberta and Ontario are tied for second place when it comes to projections about the rate of increase of the chronic condition, according to the Ontario report.

Alberta,Ontario face huge increases in prevalence but take different approaches

It’s estimated that by 2020, each of the two provinces will­ have—in the period since 2000—experienced a 250% increase in prevalence of diabetes. (Only British Columbia is expected to experience a slightly higher increase.)

To tackle this problem—prevent new cases, monitor patients to reduce serious complications, and provide timely treatment—Ontario and Alberta have adopted different approaches.

Both provinces have had formal diabetes strategies for a number of years, but they differ significantly. And while Ontario’s has been extended to 2016, the Alberta strategy, launched in 2003, formally ended two months ago.

Last year Alberta changed tack, turning to networks of patients and providers to devise improvements in diabetes prevention and care.

Only 3% of Ontario’s $746-million spent on prevention

Ontario launched the multi-pronged Ontario Diabetes Strategy (ODS) in 2008 with $742-million of funding.

The ODS set out to take steps to (among other initiatives) improve access to primary care for early identification, expand diabetes education programs, create an insulin pump program, and increase provision of bariatric surgery in the province.

While prevention was part of the ODS mandate, the Auditor’s report notes that only 3% of the total funding went to prevention.

In contrast, the Alberta Diabetes Strategy, which was launched in 2003, placed an emphasis on primary prevention. It aimed to address the risk factors common to several chronic diseases (excess body weight, lack of exercise, poor nutrition) with a goal of reducing the incidence of Type 2 diabetes.

It’s estimated that in Canada between 90 and 95% of cases of diabetes are Type 2, which is largely preventable and modifiable. Type 1 diabetes is usually diagnosed in childhood and individuals are insulin dependent.

No tally of total spending on Alberta’s defunct diabetes strategy

The Alberta strategy was funded in part by the Canadian Diabetes Strategy. It had a variety of stakeholder/funders, and as a result a total funding figure is not readily available, a spokesperson for Alberta Health says. (The federal Auditor General’s report released last week comments on the Canadian strategy, including how money was dispersed to projects across the country.)

Alberta’s strategy had a low profile, although the Canadian Diabetes Association  commends its mobile diabetes screening initiative, and the diabetes surveillance system that was developed, with separate funding from Alberta Health and Wellness (now Alberta Health) by a team based at the University of Alberta.

That surveillance system, however, which led to three editions of an Alberta Diabetes Atlas, revealed that diabetes rates in Alberta continued to increase— in 2009, 206,000 people were living with diabetes in the province, 2.5 times more people than 15 years earlier.

Justin Balko, a family physician who heads up the Leduc Beaumont Devon Primary Care Network, says diabetes care itself is a high profile issue locally, and multidisciplinary teams have had some success helping people improve their health, but adds he was not aware that there was a provincial strategy.

Alberta turns to networks of providers and patients to help solve access, quality issues

Balko is, however, quite familiar with the more recent initiative that Alberta Health Services is taking to address the major health concern—the province-wide strategic clinical network (SCN) on obesity diabetes and nutrition that was created last June. (This SCN is one of six networks that have been established to address different areas of health care.)

The obesity, diabetes and nutrition SCN facilitates meetings among patients, physicians, nurses, researchers, and dieticians, who share experience with different aspects of diabetes care.

The network’s mandate is to examine ways to improve access to care and quality of care and, by eliminating ineffective treatments, to improve sustainability, explains Alun Edwards, an active clinician who is senior medical director for the network.

Edwards says that although it’s important that health care be supported by the best evidence and be cost effective, it could be a “major challenge” to spearhead a successful push to eliminate ineffective, but widely used, treatments. The SCN’s scientific director, Jeff Johnson, helped create the Alberta Diabetes Atlas, and the SCN expects to be able to replicate, and add to, the information that was gathered in the atlas, Edwards says.

Edwards says he is excited about the SCNs as a “from the grassroots up” endeavour, given that it is usually a “struggle for government to get front line workers involved.”

Still, the network has no authority to launch programs—its role is to bring people together to talk strategy and create policy, and it makes recommendations to Alberta Health Services, which has the responsibility for implementation.

Ontario’s strategy run out of ministry’s accountability division

Last spring, Ontario’s Ministry of Health and Long Term Care (MOHLTC) announced that the Ontario Diabetes Strategy would receive another $152-million in additional funding, and be extended through to 2016.

This phase of the strategy will focus on populations and communities with the highest prevalence of diabetes and place more emphasis on screening and early intervention, according to the MOHLTC.

The diabetes strategy is being led out of the ministry’s health system accountability and performance division, though the ministry recently transferred responsibility for oversight of diabetes education programs to the province’s 14 local health integration networks.

The 2012 report of Ontario’s Auditor General found that, compared to baseline data, not much improved over the first few years of the strategy. For example, excess weight, poor nutrition and low levels of physical exercise are risk factors for diabetes, but by 2011 more Ontarians were overweight or obese and rates of physical activity had decreased.

Hospitalization rates for diabetes patients— for infections, ulcers and amputations—increased and there was only a slight improvement, to 39.6 from 37.6, in the percentage of patients who received the three key tests (blood glucose, cholesterol, eye exam) as recommended in clinical guidelines for the condition, the report states.

Further, the report found that more than $24-million (including $4.4-million for outside consultants) was spent on development of a diabetes registry, intended to improve diabetes care, before the project was scrapped (its termination is now the subject of litigation).

Hertzel Gerstein is the director of the diabetes care and research program at Hamilton Health Sciences and he holds a Population Health Institute chair in diabetes research.

He stresses the need for primary care practitioners, who provide the bulk of diabetes care, to have access to clinical expertise and leadership from care providers at secondary and tertiary care institutions. “Not all policy makers understand the importance of having both levels of care in all regions.”

Built-in evaluation missing from Ontario strategy, researcher says

Diabetes is “not going away” and rates have gone up remarkably, Gerstein observes. However, he maintains that an ongoing evaluation strategy is missing from the Ontario Diabetes Strategy, and hence “good evidence of what makes a difference” is missing.

Asked to respond to criticism about a lack of built-in evaluation the MOHLTC, in an email response, states that the strategy’s “initiatives are evaluated to ensure that money is appropriately spent to promote health outcomes for Ontarians impacted by diabetes.”

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The Question: I was diagnosed with an unprovoked saddle pulmonary embolism at the end of January after three months of antibiotics, inhalers, a chest X ray and a CAT scan. I am now taking warfarin and have my INR monitored every two weeks [dose varies between 12.5 mgs and 15 mgs - last INR result was 1.8]. Prior to my P.E. diagnosis, right up to the present time, I am experiencing chest pressure and tightness intermittently in the upper left side of my chest, towards the sternum. This symptom is not related to any activity. I have read anecdotal patient reports on the internet about post P.E. chest pain that continue for a month sometimes up to a year. I have been told that my chest pain is not connected to my P.E. In addition, I have been advised that I am at risk for having another unprovoked P.E, which I would not survive. Should a thrombosis specialist closely monitor me? I am presently under the care of my General Practitioner.

The Answer: You are a very well informed patient and yet, as you have found out, the more you dig into this complex issue, there are even more questions that require answers. A Google search on pulmonary embolism yielded more than 4.9 million hits. As you know, a pulmonary embolism occurs when one or more arteries in your lungs are blocked, typically from a blood clot that has travelled from another part of your body, almost always the legs. It is a complication of deep vein thrombosis. Signs and symptoms include unexplained shortness of breath, a cough that may bring up sputum laced with blood, in addition to chest pain. It must be treated quickly to be lifesaving.

In your case, it is quite common to feel discomfort in your chest after a pulmonary embolism. The amount of discomfort varies from patient to patient, according to Bill Geerts, a thrombosis specialist at Sunnybrook.

“There is actually an entity that we call ‘post-PE syndrome’ which is not well described in any medical literature but that all thrombosis specialists are familiar with,” Dr. Geerts wrote in an email. “It’s usually mild and there is no specific treatment for it, just time and exercise.”

Though your dose of warfarin – 12.5 mgs and 15 mgs – is higher than average, according to Dr. Geerts, it is well within the range of doses that thrombosis specialists would see patients prescribed.

“The actual dose of warfarin is not relevant – the only measure that counts is the INR,” said Dr. Geerts.

[The INR is a test of blood clotting, which requires a small tube of blood from a vein – approximately 4 milliliters - used primarily to monitor warfarin therapy.]

The target INR for pulmonary embolism is 2.0-3.0. Put another way, an INR of 1.8 is not acceptable, according to Dr. Geerts.

You also seemed worried about being at risk of a second pulmonary embolism. That is only the case if you were not taking anticoagulants, in fact, you are virtually at “zero risk” of a recurrent episode so long as you are taking the medication and your INR is in the target range. Even if you had a second pulmonary embolism, there is nothing to suggest you would not survive again, as you had suggested, said Dr. Geerts.

It sounds as if you have already spoken to your general practitioner about the chest pain and had a heart problem ruled out. However, you know yourself better than any one. If your symptoms became more acute and worrisome, I hope you would seek immediate treatment if you felt it was a medical emergency.

In the meantime, you should think about seeing a thrombosis specialist. You will want to discuss the duration of your anticoagulation therapy, make sure that the specific anticoagulant you are on is the best one for you and answer any other questions you may have.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Canada’s First Nations, Inuit and Métis peoples have, on average, much poorer health than other Canadians.

Chronic diseases like diabetes are significantly more common among Aboriginal peoples, and they have a substantially shorter life expectancy than the general population. Mental illness is also alarmingly common in Aboriginal communities, where suicide rates are often five to six times the national average. Suicide rates among Inuit youth are among the highest in the world: 11 times the national average.

There are many factors that contribute to these differences in health, which are rooted in Canada’s history of colonization. In addition to the health challenges all Canadians face, Aboriginal peoples are more likely to live in crowded homes, are more likely to smoke, and less likely to have stable access to an appropriate diet, all of which contribute to poorer health.

In addition, survivors of Canada’s residential school system frequently suffer from trauma inflicted by residential schools. In addition to loss of culture, language and parenting skills, survivors and their families frequently suffer from post-traumatic stress disorder, and unresolved trauma can lead to further mental illness and re-victimization of new generations.

Beyond these social contributors, Aboriginal peoples also tend to have less access to health care services than other Canadians. This is particularly true in northern Aboriginal communities, many of which have very limited access to doctors and other health care providers. Even when Aboriginal peoples do have access to health services, they often face discrimination and a lack of culturally appropriate care. For these reasons, the recruitment of more Aboriginal doctors has become a priority for many of Canada’s medical schools.

The need for more Aboriginal doctors

Canada’s medical schools have recognized that they must become more proactive in recruiting Aboriginal doctors and training non-Aboriginal doctors to be culturally competent and safe, says Nick Busing, President of the Association of Faculties of Medicine in Canada. “Medical schools must be socially accountable to Canadians,” he says, “and an important part of this is making sure that the doctors we train will meet society’s needs.”

Aboriginal doctors are often best equipped to provide culturally competent and safe care to other Aboriginal people, according to Darlene Kitty, President of the Indigenous Physicians Association of Canada. “Aboriginal doctors already know the culture and the history… they’re already sensitive to the issues in their community,” she says. “Many people in our communities have trauma,” she continues, “and other Aboriginal people often understand that trauma a lot better than non-Aboriginal people.”

Aboriginal students also contribute to the cultural diversity of medical schools, and this diversity helps all medical students, both Aboriginal and non-Aboriginal, become more culturally competent and culturally safe, says Kitty. This is echoed in Canada’s accreditation standards for medical schools, which stress that doctors will be best prepared to deliver health care to a diverse population if they are educated in a diverse environment where they are exposed to other cultures.

Evidence also indicates that one of the best predictors for where future doctors will practice medicine is where they went to high school. “If all of our medical students are from the big cities, then that’s where all our doctors will want to practice,” says Busing. The expectation is that if medical schools can recruit medical trainees from underserved Aboriginal communities, then there is a good chance that some of them will return to their communities once they have completed their training.

But the need for more Aboriginal doctors goes beyond just the needs of rural and remote communities. More than half of Canada’s 1.3 million Aboriginal people live in urban areas, and they too can benefit from more culturally competent doctors.

Challenges in recruiting Aboriginal medical students

Recruiting more Aboriginal medical students, however, is not easy. In addition to the substantial challenges all applicants to medical school face, Aboriginal applicants often face additional barriers, some of which can continue throughout medical school and residency.

The pool of potential Aboriginal applicants to medical schools is small, since less than 4% of Canada’s population is Aboriginal.

However, the biggest factor restricting the number of potential applications is the much lower rates of post-secondary education (a pre-requisite for medical school) among Aboriginal people. Only 12% of Aboriginal Canadians complete a post-secondary degree, compared to 33% of non-Aboriginal Canadians. The rate is even lower (5%) for Aboriginal youth living on reserves.

These lower rates of post-secondary education are rooted in many of the same social determinants and multi-generational trauma that contribute to the poor health of many Aboriginal peoples. In addition, funding for schools on reserves is rarely comparable to that provided to other Canadian schools.

Even for Aboriginal applicants who obtain post-secondary education, medical school admission remains a challenge due to academic requirements and/or cost. The cost of medical school has increased steadily in recent decades, and medical students are graduating with record levels of debt, factors that have likely contributed to the disproportionately low enrollment of students of lower socioeconomic status in Canada’s medical schools. Since Aboriginal Canadians are more likely than other Canadians to be of lower socioeconomic status, the sheer cost of medical school is likely a deterrent for many potential Aboriginal applicants.

Furthermore, the location of the vast majority of medical schools means many Aboriginal students must leave their community for new settings for at least the length of medical school and their post-graduate training.

“Culture shock” for many Aboriginal medical students

For those Aboriginal applicants who are accepted to medical school, the challenges often continue. “I experienced huge culture shock when I got to medical school,” says Doris Mitchell, a graduate of the Northern Ontario Medical School who practices in Chapleau, Ontario.

“Age can be a big thing,” says Mitchell, who worked as a nurse for 15 years before going to medical school. “Many of us [Aboriginal medical students] were coming in as adult learners. We had families already, and there are challenges with caring for them while at school.” The difference in age compared with most medical students can create a sense of isolation from the rest of the class, she says, “it can make you feel very different.”

This sense of difference was amplified by the competitive culture of medical school. “Coming from an Aboriginal nursing background, I was used to an environment that was very nurturing, very non-judgmental, very non-competitive,” she says. “You learn to be very comfortable talking about your struggles, what you need to work on to become a stronger person or a better caregiver. Medical school was very different. It was a very competitive environment… people keep their cards close to their chest… they don’t want to reveal themselves; what they see as weaknesses. I found this very difficult. My colleagues didn’t understand. When asked to self-evaluate, my colleagues thought I was putting myself down. I think my ability to talk about myself is a huge strength, it lets me improve as a doctor and as a person, but my colleagues didn’t see it that way. I found this very difficult.”

“Isolation is a big thing,” says James Andrew, Aboriginal Student Initiatives Coordinator at the University of British Columbia. “For students coming from really small communities where they’ve known everyone for their whole lives, it’s really hard on them to come to university where they know no one. It’s a big shock to the system.”

Progress is slow, but real

“Medical schools are doing a lot more now to recruit Aboriginal students,” says Kitty. When she went to medical school at the University of Ottawa from 1998 to 2002, she was the only Aboriginal student for those four years. Since she finished in 2002, she says, the University of Ottawa has admitted 40 Aboriginal students to the program.

The University of Alberta was the first school in Canada to make recruiting Aboriginal medical students a priority, by setting aside seats specifically for Aboriginal applicants. Aboriginal applicants must still meet the rigorous academic requirements as all other medical students, so not all of these seats are filled every year.

Canada’s other medical schools have followed suit, with nearly all now setting aside a small number of seats for Aboriginal students, says Kitty. While the University of Calgary does not reserve seats for Aboriginal students, in 2010 it began to evaluate MCAT scores from Aboriginal applicants against historic data on Aboriginal applicants’ scores, rather than against the general applicant pool. Since then it has nearly doubled the Aboriginal students it accepts each year.

The University of British Columbia (UBC) now reserves 14 seats for Aboriginal applicants. But Andrew stresses that filling those seats (this year UBC filled only 5 seats from 23 applications) takes a lot more than “just putting up a welcoming banner.”

In order to encourage Aboriginal youth to consider applying to medical school, UBC has run an outreach program for the last 10 years aimed at undergraduate and high school students. “We do workshops about the admissions process: how to fill out your application, how to prepare for the MCAT, and mock interviews… We also connect them with some of our current Aboriginal medical students who mentor them during the program, which is a big help to them.”

The University of Alberta runs a similar program called Health Horizon Days in collaboration with Alberta’s First Nations under treaties 6, 7 and 8, where selected students go to Edmonton for two days to visit the campus and take part in hands-on workshops on medical science, medicine & dentistry. Many outreach programs like these are supported through Health Canada’s Aboriginal Health Human Resources Initiative, which was launched in 2004 to improve the recruitment and retention of Aboriginal health care workers across the country.

Medical schools have also begun to do more to provide financial support for Aboriginal medical students. Students at the Northern Ontario School of Medicine (NOSM) can access special grants and bursaries to help with the financial burden of medical school says Lisa Graves, Associate Dean of Undergraduate Medical Education at NOSM.

Aboriginal health slowly becoming part of the curriculum

In order to facilitate greater uptake of Aboriginal health in medical school curricula, the Indigenous Physicians Association of Canada (IPAC) partnered with the Association of Faculties of Medicine of Canada (AFMC) to develop a curriculum framework and implementation toolkit for core competencies in Aboriginal health for undergraduate medical education.

Schools like UBC have significantly increased the amount of the curriculum devoted to Aboriginal health. “When I started, Aboriginal health was a single hour and a half lecture,” says Andrew, “now it’s much more integrated; there’s a lot more.”

In addition to more focus on Aboriginal health in the classroom, NOSM has an Aboriginal elder on each campus, says Graves. Any student, faculty or staff can go talk to the elders to get their perspective or advice, but it’s especially helpful I think for our Aboriginal students to have them there,” she says.

NOSM has also adopted an unusual orientation. Rather than go through orientation at one of the campuses in Thunder Bay or Sudbury, NOSM tours its students through Northern Ontario, to introduce them to the kinds of communities that they are being trained to serve in.

This past year, students stayed in the Aboriginal community of Obishikokaang and heard from community members about their challenges, including experiences in residential schools and living in a community that does not have safe drinking water. “This had a profound effect on all our students,” says Graves, “and we heard from our Aboriginal students that it made them feel welcomed by the medical school.”

“We could be doing more”

While Kitty is pleased with the progress many of Canada’s medical schools have made in both recruiting and retaining Aboriginal medical students, she says “we could be doing more.”

Busing also believes more could be done to bring Aboriginal health into medical education. While he is proud of the Aboriginal curriculum framework developed by IPAC and AFMC, he notes that not all of Canada’s medical schools have embraced this framework equally. “There’s no doubt that medical faculties, to one degree or another, teach to the test,” he says. He believes that if cultural competency and safety start to appear on the licensing exams for physicians, Canadian medical schools would quickly make it a larger focus.

Mitchell agrees, but is clear that unless the social barriers for Aboriginal students are addressed, reserved seats at medical schools and curriculum changes can only do so much. “There are so many challenges Aboriginal people face today,” she says, “whether it’s isolation, substandard education, poor preparation, lack of role modeling… unless you’re willing to talk about and tackle these issues, things aren’t going to get better.”

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The Question: My wife had arthroscopic surgery for a rotator cuff injury more than two years ago. Unfortunately, the surgery did not help because my wife is still experiencing severe pain intermittently. She did physiotherapy and lately she did shock wave therapy. Basically, we did everything. We want to get another opinion. Please help us on how to start.

The Answer: I sense you are exasperated and justifiably so – it is difficult to know where to turn, especially when you feel you have gone through every available avenue to address your wife’s medical issue. According to Robin Richards, Sunnybrook’s surgeon-in-chief emeritus, in about 15 to 20 per cent of cases, symptoms persist after rotator cuff surgery. “Nothing we do is 100 per cent successful,” notes Dr. Richards, an orthopedic surgeon who specializes in shoulders. “There is a significant percentage who don’t get better.”

The rotator cuff is a thick tendon that surrounds the upper end of your arm bone, medically referred to as the humerus. Its job is to initiate movements of the shoulder and to hold the ball in the socket of your shoulder, allowing you to use the big muscles in your arms. It can be damaged through repetitive use, age-related changes and in rare cases, trauma. When damaged, patients feel pain from the swollen, inflamed tendon, which can be particularly intense at night or when lifting overhead.

The most common need for surgery is to decompress painful chronic rotator cuff tendonopathy, a wear and tear process or to repair a tear of the cuff. “The tendon can become thin and develop a tear,” said Dr. Richards. “When a patient doesn’t get better after surgery you have to ask: ‘Did the repair fall apart?’”

When surgery is unsuccessful, the surgeon will look first for complications such as infection and then try to determine if the surgery was done for the correct diagnosis, if the decompression of the cuff was adequate and if the cuff repair healed. The surgeon will do a physical examination, take a medical history and order investigational procedures such as an MRI and X-rays. From there, the surgeon will form a diagnosis and determine whether a revision surgery is likely to work.

“If the MRI shows a re-tear, the repair had failed, then we would think about surgery again,” according to Richard Holtby, an orthopedic and shoulder surgeon at Holland Orthopaedic & Arthritic Centre. “Usually the MRI accurately diagnoses a retear but it is not perfect and sometimes the only way to know if a repair failed is to look at it again surgically.”

Typically, surgeons will do a revision if it is medically indicated.

“If it was a small rotator cuff tear, and the surgeon felt he had a good repair and expected a good result but the patient did not get a good result, we would think about doing another surgery,” said Dr. Holtby.

If it’s a big tear, however, and the surgeon knew it was never going to be perfect but did the best job possible, due to the limited amount of tissue, a second surgery is unlikely to be more successful, said Dr. Holtby.

Something to be mindful of: in revision surgery for rotator cuff problems, 70 to 75 per cent of patients will rate the operation as good or excellent, compared to 80 to 85 per cent who undergo a primary rotator cuff decompression and/or repair. Complication rates also increase with revisions, with 5 per cent of patients experiencing at least one, such as an infection, bleeding, nerve damage or stiffness. That compares to the 2 per cent of cases that typically experience one of those complications the first time around.

The good news is that the rotator cuff doesn’t have to be perfect to have a good result. It’s rare that surgeons can’t find a way to fix it. If the repair didn’t work the first time, the surgeon might reinforce the cuff with other biological material, transfer a muscle from nearby to replace the damaged cuff muscle or replace the shoulder.

Dr. Holtby suggests you ask for a second opinion. “No one should hesitate to ask their surgeon for a second opinion,” said Dr. Holtby.

If your wife is still experiencing pain, she should go to the surgeon. She might want to say that she knows the doctor did her or his best and she knows that shoulder surgery is complicated. She could also say that she’s not sure why she’s having the symptoms but would like to find out. She should then ask if she could get a second opinion or if there is someone else she could talk to. She should thank the surgeon for the care.

Once you have that appointment, she needs to get all the reports together, preferably on a CD. She needs MRI scans, X-rays, copies of the operation record and consultation reports. She should physically carry these with her to the appointment with the new surgeon – she should not rely on her surgeon to send these reports because it may not get there in time.

“Whenever there is failed surgery,” said Dr. Holtby, “It is probably reasonable to get a second opinion.”

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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We have been working quietly on some big changes to the site over the last few months, and we’re finally read to unveil them! Over the coming weeks we are re-launching the website with a new look, lots of interactive features and a new design for mobile devices. But before we get to discussing those, I’d like to share our biggest announcement…

Healthy Debate to launch in Alberta May 2nd

I am pleased to announce that Healthy Debate is expanding its coverage of health care issues to Alberta.

For the last two years, Healthy Debate has focused largely on health care issues in Ontario, although much of our content is of relevance across Canada and internationally.

We believe, however, that Canada’s provinces have much to learn from each other, and that Canadians would benefit from more dialogue about their provincial health systems in order to better appreciate both their strengths and their weaknesses.

In order to expand our focus beyond Ontario, we are very excited to add seven new Alberta based editors to the Healthy Debate team. These editors are all experienced health system leaders from a range of backgrounds, including nursing, medicine, management, policy and education.

Our new Alberta editors are (you can read their detailed bios on the Our Team page):

Bob Bear – Former Executive Vice President and Chief Clinical Officer of Capital Health.

Jeanne Besner – Former Chair of the Health Council of Canada.

Greta Cummings – Professor in the Faculty of Nursing at the University of Alberta.

Jill Konkin – Associate Dean for Community Engagement at the University of Alberta.

Chip Doig – Former President of the Alberta Medical Association.

Roger Palmer – Former Deputy Minister of Alberta Health and Wellness.

Verna Yiu – Executive Vice President and CMO of Quality and Medical Affairs at AHS.

Beginning on May 2nd, many Healthy Debate articles will provide analysis of issues facing both provinces. We will continue to provide analysis of some Ontario and Alberta-specific issues, as well as some pan-Canadian issues, but we will frequently be looking at these issues with an eye to what these two provincial health systems can learn from each other.

Healthy Debate is a platform to become informed about your health care system, but also a place to make your voice heard. We hope that many Albertans will submit Opinion pieces, to provide a Western perspective on health system issues.

This expansion to Alberta was made possible by a grant from Alberta Innovates – Health Solutions (you can learn more about our funding on our Funding page).

New interactive features

Healthy Debate is not just a news site. From the beginning, our goal has been to foster thoughtful, respectful dialogue about Canada’s health care system. With this in mind, we’ve introduced several new features to make it easier than ever to jump into the debate.

One of the big changes is that we have added live web chat functionality to Healthy Debate. Starting in May we’ll be hosting live chats, with Healthy Debate editors and featured guests. These chats are an opportunity to engage directly in dialogue with patients, practitioners, influencers and decisions makers about key health care issues. We’ll start off by doing one of these chats each month, with the subject based on one of our articles or opinions. We’ll have Healthy Debate editors on each chat, as well as featured guests. Anyone can join these chats by visiting the site, and transcripts from past chats will be available in an archive. Joining a chat is easy – you’ll be able to log in either as a guest, or with your Facebook or Twitter account.

The first chat will be about the closing of obstetrical wards in rural Canada. It will take place on May 17^th, at 10:00am Mountain Time; 12:00pm Eastern Time.

Making it easier to comment

The biggest thing we’ve heard from our community over the last two years is that you hate the “Captcha” – the hieroglyphics that you have to decode in order to leave a comment. While we can’t take this feature out completely or the site would be filled up with spam, we’ve added a “Remember Me” function. When you leave a comment, you now have the option to let the site remember you, so that you never have to enter your name or fill out the Captcha again. We hope this will make commenting on stories a much less painful process.

We’ve made a number of other tweaks to the commenting system, including making it easier to reply to an existing comment, as well adding “Featured Comments” that will display at the top of the page to give readers a snapshot of the unfolding debate.

For all our Twitter followers (and there are a lot of you!), we’ve added a Twitter feed to the sidebar of the main page, so that other readers can share in the dialogue on social media.

New website design

We’ve had a lot of feedback on our website design over the last two years, and we’re pleased to be launching a new design that addresses a lot of the shortcomings of the old site.

Right away, you’ll see we’ve done away with the old vertical columns, and now have a lot more content displayed.

You’ll find our latest article in the big featured box at the top, with recent articles in a row below that. There are arrows on the right and left of the “Recent articles” section that you can use to scroll to see more content.

“Recent Opinions” now appear right below recent stories. You can the scroll arrows on the side to browse through all of our recent opinions.

We heard from a lot of people that they would like a quick way to find out which articles are generating the most discussion on the site. In response, we’ve added “Popular Debates” right below the opinions section. This section displays the five articles and opinions that are getting the most attention, either through comments, views or sharing on social media.

We also wanted to be able to share some of our older content with you, especially when one of our articles or opinions could shed some light on breaking news. You’ll find a handpicked selection of older content under “Editor’s picks”, right below our Popular Debates. We’ll update this section every week.

We’ve also given Lisa Priest’s Personal Health Navigator its own section. You’ll find all of Lisa’s new articles at the bottom of the main page, right below Editor’s Picks.

We’ve completely rebuilt the search feature on the site, so it’s now much easier to find what you may be looking for. We’ve also fixed the “tags” system, so if you want to find a story related to the one you are reading, just click one of the tags at the top to see a list of related stories. Give it a try!

New mobile site design

Next week we’ll be rolling out a mobile version of Healthy Debate. This new design will make it much easier to read and comment on your mobile phone. Look for this new feature late next week!

We’re very excited about these changes, and hope they enhance your experience on Healthy Debate. If you have any feedback about the new site or anything else, please don’t hesitate to contact us.

Thank you for being part of the Healthy Debate community.  We look forward to continuing the debate!

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Those are just two of many international cohort studies—studies that follow large groups of people over many years.

In Canada, starting such studies has never been easy because of the challenge of  securing long-term funding commitments and harmonizing the collection of data across provincial and territorial jurisdictions.

But in the past decade or so, important Canadian cohort studies have been launched  in order to shed light on the impact that crucial biological and environmental risk factors have on the development of cancer and other chronic diseases. Five regional cohort studies together comprise the Canadian Partnership for Tomorrow Project (CPTP), launched in 2008 as a national research platform.

Canadian advantage is the ability to link to health care records

Canada’s particular advantage in launching cohorts is the potential for record linkage–linking information gathered from study participants to provincial health care data, says John Potter, who is chair of the governance committee of the CPTP. A New Zealander, Potter is a physician epidemiologist, whose speciality is studying the causes and prevention of cancer. He has extensive international experience with cohort studies.

The size of the combined CPTP, together with the ethnic diversity of Canadians, will also present a huge opportunity to facilitate study of the causes of cancer and common chronic diseases and contribute to knowledge, he says. He adds that in his experience, once people become involved in cohort studies, they are “incredibly generous” with their time, allowing for extensive follow up.

By far the largest of the five regional cohorts is the Ontario Health Study (OHS), which began collecting information in late 2010. Other studies under the CPTP umbrella include three projects launched in 2009—the BC Generations Project, Quebec’s CARTaGENE, and the Atlantic PATH—as well as Alberta’s Tomorrow Project.

The Alberta cohort was originally launched in 2000 and information was gathered only by a questionnaire. When it joined the CPTP, the Alberta project began collecting blood and urine samples at study centres in Calgary and Edmonton, as well as at a mobile unit.

About 240,000 volunteer participants have completed the OHS online health questionnaire. Of the Ontario total, about 45,000 have donated blood samples (the goal is 60,000), while another 10,000 (out of the 20,000 goal) have undergone a more comprehensive assessment at Women’s College Hospital in Toronto, says OHS executive scientific director Lyle Palmer.

Ontario cohort relies on volunteers completing a web-based questionnaire

Although OHS participants are volunteers, they are “broadly representative” of the Ontario population, based on census parameters, he says. In terms of ethnicity, Aboriginals are slightly over represented while East Asians are under represented, he says. As well, because participants were originally recruited from universities and hospitals, there’s also “a slight bias” towards participants who are more educated, wealthier and urban dwelling.

The study, which began collecting information in late 2010, is the first prospective cohort study in the world to rely exclusively on a web-based questionnaire for recruitment and to collect baseline information, says Palmer. Total funding from 2007 to March 31, 2013 is just under $30-million, and the study has funding commitments from the province (through the Ontario Institute for Cancer Research) and the federal government (through the Canadian Partnership Against Cancer) to 2017, he says.

OHS participants can agree to have the information they provide in the online questionnaire be linked to their Ontario health care data (they can remain in the study if don’t agree to linkage), and they will be asked to fill out subsequent questionnaires that may probe in more depth particular areas such as their exercise and eating habits. Participants also are given their own “homepage” and those who provide blood samples will be notified of the results.

Still, the study is “thin”— in terms of the information and biological samples that it collects—compared to many international cohort studies and some other, smaller, Canadian cohorts.

For example, only blood is collected from the largest subset of enrolees, while some other studies in the Canadian Partnership for Tomorrow also collect urine and other biological samples.

But cohort studies can differ and the OHS is designed as a platform, or sampling, study that will make its information available to “good researchers with good questions,” Palmer notes. Researchers could well obtain their own funding if they want to collect more information from study participants.

Scope of Ontario study expanded: more recruits, fewer samples

The size and scope of the OHS changed considerably when Palmer, a genetic epidemiologist, took over the reins two and half years ago. It was first envisioned to be primarily about genetic and environmental risk factors for cancer, and more information and biological samples would have been gathered from a smaller number of recruits, aged between 35 and 69 years old.

The revised OHS is casting a wider net in terms of the age of participants—now between 18 and 69—and more scientists and researchers from a wider range of health disciplines are involved in the study design, thus expanding the scope of conditions it is hoped that the cohort will shed light on.

The target cohort size has also expanded—from an original 150,000. Palmer says his “aspirational” goal is now to enlist 1-million participants.

The role of environment was to play a larger part in the original study. In addition to blood and urine samples, researchers were hoping to collect water and dust samples from people’s households, and get radon measures from Health Canada, says Shelley Harris, an epidemiologist specializing in occupational and environmental health with Cancer Care Ontario who worked on the original proposal.

Although it would have been very costly to collect and analyse such information, it  would have allowed for more study of the interaction of genes and the environment, Harris notes. Still, some measures to study environmental exposure can be added, such as mapping people’s home and work location histories against known environmental exposures.

Harris notes that the broader age group in the current OHS means women of childbearing age are now part of the cohort and “we rarely have good information about women in their reproductive years.

Blood samples vital part of all five regional cohort studies

The regional studies that make up the CPTP project differ slightly in their focus but all ask a core set of questions, and involve participants between 35 and 69 years of age, says Jacques Magnan, senior scientific lead for the project. An important goal for all member cohorts is to collect a robust number of blood samples, so researchers can look for molecular markers of people who develop a particular disease compared to those who don’t, which could provide opportunities for prevention approaches. As well researchers can track markers for information about  nutrition and hormone levels, as well as some environmental exposures.

The recruitment goal for CPTP is 300,000, which has almost been met (the OHS will account for half of the total number of recruits 35 to 69 years of age) and the project is also linked up with international cohorts, through the Public Population Project in Genomics.

For the five years ending March, 2012, the CPTP spent about $100-million, says Heather Bryant, vice president of cancer control at the Canadian Partnership Against Cancer (CPAC). THe partnership, the single largest funder, contributed $40-million to that total, with the balance from co-funders including the BC Cancer Foundation, Alberta Innovates-Health Solutions, the Alberta Cancer Society, the Alberta Cancer Prevention Legacy Fund, the Ontario Institute for Cancer Research, Public Health Ontario, Genome Quebec, Genome Canada and the Canadian Foundation for Innovation.

Planning and recruitment is “the most expensive phase” of cohort studies, she says, adding that the project is now in the “building phase” which should be completed by March 2015.

Information and samples to shed light on cancer, chronic diseases

Although a key focus is cancer, the cohort studies are gathering information and biological samples that will be useful to study a wide range of chronic conditions and illnesses, such as diabetes and heart disease, and to assess the contribution of genetics, lifestyle, environment and diet to the development of illness.

A very different type of cohort study from the OHS, and the only Canadian cohort to receive Canadian Institute for Health Research (CIHR) funding, is the Canadian Longitudinal Study on Aging (CLSA). It began recruiting in 2009 with the goal of studying the “trajectory and transitions” in health of 50,000 participants, selected on a randomized basis, between 45 and 85 years old, says principal investigator Parminder Raina, a professor of clinical epidemiology at McMaster University.

The Canadian Partnership for Tomorrow Project stands as the largest cohort ever launched in the country and it is based on a high level of inter-regional cooperation to assure that complementary information is gathered from recruits in the different regions.

It should provide a rich resource for researchers studying important aspects of the development of cancer and chronic diseases. Some of those researchers will likely look for funding from the CIHR, the Canadian Cancer Society Research Institute and the Heart and Stroke Foundation—organizations that may play an important role helping to sustain the project over the long term.

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The Question: My father has been diagnosed with lymphoma and has begun treatment with one round of chemotherapy so far and several medications. I was wondering if early results are not favorable how can I get better care rather than what he is receiving now?

The Answer: There are more than 40 different types of lymphoma, a cancer of the lymphatic system, that are typically divided into two main types: Hodgkin lymphoma and Non Hodgkin lymphoma. Since the medical protocols for treating these forms of cancer are standard, most can be easily managed in community and teaching hospitals, according to Eugenia Piliotis, a hematologist who specializes in lymphoma at Sunnybrook.

“In the majority of cases there is no need to be sent to a teaching hospital for treatment,” said Dr. Piliotis, who is also associate professor in University of Toronto’s department of medicine. “Exceptions to that would be if there is a potential for a clinical trial you may be eligible for that you and your physician think you would be a good fit.”

The other exception is if you have a rare type of cancer, such as cutaneous t-cell lymphoma, high-grade lymphomas, or other rare, aggressive types of lymphoma that require super-specialized treatment by clinicians as well as pharmacists and nurses most familiar with them.

What I am wondering, though, is if this is a treatment issue or one if you are lacking confidence or are having trouble trusting the oncologist. When a patient has been diagnosed with cancer, it is almost always the worst thing that has ever happened to them. It’s not a surprise, then, if you are wondering whether the treatment your father is obtaining represents the best possible care.

If your father does not have a favorable response that may be due to a cancer that is not responding to treatment and requires another protocol, rather than a clinician who is not providing the best care.

Having said all that, it is reasonable to ask for a second opinion if you are having doubts or you want to confirm the diagnosis and treatment plan. However, to obtain that second opinion, it is best to ask the treating oncologist to arrange it – not your family physician. Just having this conversation with the oncologist may help dissolve some of your concerns.

If you want a second opinion and you are concerned about offending the oncologist, don’t be. So long as you word it politely, it should not be an issue – oncologists are used to being asked for second opinions.

You may want to word your question something along these lines: “I have faith in you but I’m anxious. This is a big diagnosis and I want to make sure I’m doing the right thing for myself. Is it possible to get a second opinion?”

That oncologist is the best person to facilitate the second opinion as she or he can tell the other cancer specialist what treatments, tests and scans you have had.

“Most often patients get here and we tell them the exact same thing that their primary oncologist has already explained, so usually we are just reassuring,” said Dr. Piliotis. “Everyone deserves a second opinion if they have concerns.”

I wish you and your father all the best.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Obtaining a good history is the most important thing in practising medicine, so being able to get that history about the children of new immigrants has made a “humungous difference”, says Stan Lipnowski, a pediatrician who practices at the Manitoba Clinic in downtown Winnipeg.

The Winnipeg Regional Health Authority (WRHA)’s language access program, launched in 2007, offers language interpreter services on a no-fee basis to hospitals, clinics, long-term care facilities and, unusually, even in the offices of doctors like Lipnowski who practice medicine on a fee-for-service basis.

Before the interpretation program,  “gestures and guesswork” were often used in attempts to obtain medical histories for children—frequently high needs children in need of specialized care— whose parents didn’t speak English, says Lipnowski. “We were never quite sure… and there were often unnecessary tests.”

It’s generally acknowledged that the ability to communicate is the cornerstone of medicine for making a diagnosis and explaining management options.

However interpretation services have historically been considered an “add on” cost supported only by “soft” social science evidence, says Sarah Bowen, an associate professor of public health at the University of Alberta. (“Intepretation”  refers to  oral translation, while “translation” is used with reference to written text,  Bowen explains.)

People in positions of power “don’t know much about this issue”

As well, “people in positions of power and authority don’t know much about this issue…and many do not have lived experience with it,” she says.

Bowen did background research to establish the framework for the WHRA language access program, and is the author of numerous reports on the subject, including a landmark 2001 Health Canada document on language barriers in access to healthcare, a Canadian Institutes for Health Research Knowledge to Action project, and a 2011 presentation to Accreditation Canada on the language barrier issues.

Recently, however, the importance of professional interpretation services has moved up the policy agenda because of a mounting body of international evidence about the risks associated with the use of untrained interpreters.

Interpretation services are increasingly understood to be part of risk management, the patient safety agenda, and strategies to address disparities in access to health and health care, Bowen says.

When the Toronto Central Local Health Integration Network (TCLHIN) surveyed healthcare organizations within its boundaries, all respondents identified a need for enhanced language services, said Rachel Solomon, senior director of performance measurement and information management at TCLHIN. A 2011 equity consultation report with stakeholders also revealed a considerable variety of hospital and healthcare institution policies and services for interpretation services.

“Bulk buy” of telephone interpretation initiated by Toronto Central LHIN

The WRHA’s program , developed on a regional basis, has been designated a “leading practice” by Accreditation Canada.

In Toronto, one of the most ethnically diverse cities in the world, the TCLHIN last fall launched an initiative to facilitate the bulk buying of telephone interpretation. (Historically, interpretation services in Ontario have developed on an institution-by-institution basis.)

The bulk buy led to better rates but still, because language interpretation services are a “spend”, health care administrators want hard facts about risks of inadequate interpretation and benefits of professional interpretation, notes Solomon.

Solomon says her LHIN’s focus is on the importance of interpretation from a “quality, equity, and sustainability of care” perspective, but she acknowledges that there is “absolutely a risk management lens … and we have heard from some organizations that there is a fear of liability” when something goes wrong because a service was not provided in a way that a patient could understand.

Canada lacks enforceable national standards for healthcare interpretation

Canada lacks enforceable national standards for healthcare interpretation for people with limited English and French proficiency and is behind other jurisdictions such as the United States, the United Kingdom and Australia, in providing such services.

The WHRA developed its own standards, ethics and policies for its program and, around the same time, the Ontario-based Healthcare Interpretation Network developed a set of national standards.

More recently, a National Coalition on Community Interpreting has formed and, at a Critical Link International Conference this coming June, TCLHIN chief executive officer Camille Orridge is scheduled to speak on “interpretation as a critical healthcare service.”

The notion that “any interpretation is better than none” to facilitate communication with patients has been overwhelmingly disproven, says Bowen, who points to numerous published studies based on transcription analysis.

“The error rate of untrained interpreters (including family and friends) is sufficiently high to make their use more dangerous in some circumstances than no interpreter at all” because of the false sense of security it provides, the U.S. Office of Minority Health concluded back in 1999. (As well as using family and friends of patients, many hospitals have traditionally used staff, sometimes from unrelated departments, to interpret.)

Costs of inadequate interpretation a “hidden problem”

The costs of inadequate interpretation—costs resulting from misdiagnosis, unnecessary tests, and lack of preventive health care—have largely been “a hidden problem,” Bowen notes. Poor interpretation has also resulted in the violation of patient confidentiality and inadequate informed consent.

The WHRA initiative was driven by careful documentation of the risks associated with inadequate interpretation, and by champions at the upper levels of administration, says Jeannine Roy, WHRA manager of language access.

Demand for interpretation services within the WRHA increased from 1,851 requests in its first full year to 13,187 requests in the year ended March 31, 2013, she says. About 5% of requests went unfilled. Despite the uptake, many of the WHRA’s 29,000 employees are not yet familiar with the service, she adds.

The WHRA has a centralized scheduling and dispatch service and the program emphasizes face-to-face interpretation, which is offered by the region’s 60  interpreters who are unionized casual employees and receive free training from the WRHA.

WHRA policy spells out when to “at least attempt” to have face-to-face interpretation

The region’s policy says that health care providers must at least attempt to secure professional face-to-face interpretation services for matters such as diagnosis, mental health questions, discharge planning and informed consent.

Telephone interpretation is considered appropriate for more routine interactions and, as well, as a back up service. About 25% of the program’s services involved telephone interpretation, Roy says.

The program’s operating budget is slightly more than $1-million, which covers interpreters, telephone interpretation and administration staff, says WHRA media officer Bronwyn Penner Holigroski. The service costs are covered by the WHRA although there is some cost recovery when other government departments or regions draw on the service.

In Toronto, the TCLHIN also found that the cost of telephone interpretation services varied considerably (from  $1.70 to $8 a minute) and that community organizations such as community health centres were largely unable to afford telephone interpretation services.

In Ontario, Excellent Care for All Act helped push for better ways to provide interpretation

At the same time, the province’s Excellent Care for All Act, which underscored patients’ rights to understand the care provided to them, helped to push the LHIN to consider better ways to provide services.

The LHIN arranged a bulk buy of telephone interpretation services from the Toronto based RIO Network and backup services through the California-based Language Line Services (recently renamed Languageline Solutions).

Nineteen hospitals and 14 community organizations now participate in the bulk buy, which was launched in last October. The TCLHIN has opened up participation in the bulk buy to other LHINs and organizations within those LHINs. For the first month, 22,000 minutes of interpretation were used. In February this year, 37,000 minutes were used, a level of uptake which has already brought costs to the lowest pricing tiers of less than $1.50 a minute, Solomon said.

Hospitals are charged back for the service but the LHIN has also, as a pilot project, budgeted $200,000 for the provision of telephone interpretation to certain community organizations. Based on the experience of this pilot, community health centres (CHCs), which already have a budget for face-to-face interpretation, will know better how to budget costs for telephone interpretation, says Angela Robertson, executive director of Central Toronto Community Health Centres.

A big advantage of the telephone interpretation service is that it doesn’t require purchase of new equipment, Robertson notes. (Video interpretation, offered through the non-profit Health Care Interpreter Network in California, is widely used in hospitals. While it requires substantial investment in hardware and technology it has, as promotional material notes, the advantage over in-person interpretation that interpreters do not run into travel delays.)

In-person interpretation used for more complex interactions

Robertson says that at CHCs in-person interpretation (by multilingual CHC staff who treat patients, as well as services purchased from a provider) will continue to be used for longer, more complex interactions, while telephone interpretation (either through speaker phone or, more privately, with two handsets) is for more routine communication.

The entire TCLHIN bulk buy initiative is to be evaluated by the Centre for Research on Inner City Health (CRICH), which is based at St. Michael’s Hospital in Toronto. (St. Michael’s Hospital itself is not participating in the bulk buy because it signed a three-year contract for telephone interpretation before the bulk buy was offered.)

Robertson says the CHCs, which in Ontario specialize in providing services for marginalized communities, have been pushing for hospitals to improve language interpretation services in order to provide continuity of service for clients.

Asked if the TCLHIN has contemplated a bulk buy of in-person interpretation services, Solomon says the LHIN “tries to leave the operational use and implementation to the organizations themselves and thus far, has not contemplated a policy around use of [in-person] interpretation services. That said, it is the LHIN’s expectation that the organizations are meeting the needs of ALL of its patients.”

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Recognizing that drug funding decisions should incorporate the values, needs and attitudes of Ontarians, The Transparent Drug System for Patients Act passed in 2006 mandated the creation of a citizen’s council to advise the Executive Officer of the Ontario Drug Benefit Program.

The Ontario Citizens’ Council was established in 2009, based on a public engagement model pioneered in the United Kingdom.

The citizens’ council is made up of 25 Ontarians (12 seats are currently vacant), with backgrounds like teaching, finance, publishing and communications. To date it has met four times and provided the Ontario Public Drug Programs (OPDP) with recommendations on issues such as funding drugs to treat rare diseases.

Bruce Raymond, a retired broadcaster who served on the council until last year, believes the council is important for Ontario. “This is an opportunity for the average citizen to act as a prod to elected officials and government staff to remind them that they’re serving a very wide and eclectic community,” he says.

The citizens’ council is unique in Canada and those involved believe it is a promising development. However, the council has not met in over a year, and some councillors are concerned their input has not had the impact they expected.

Public engagement in the United Kingdom

The Ontario Citizens’ Council is based on the public engagement strategy used by the United Kingdom’s National Institute for Health and Care Excellence (NICE). In 2002, NICE established a citizen’s council to provide it with a public perspective on overarching moral and ethical issues in health policy.

NICE’s citizens’ council meets over a weekend, and the councillors hear from a range of experts on an issue, with the opportunity to ask questions. The councillors then deliberate about what they have heard. After the weekend has concluded, the councillors produce a report, which may include recommendations on issues where there was consensus, and also reports where there was disagreement. Ontario’s council follows a similar model.

NICE’s citizens’ council has met once to twice a year since being established, and has produced 15 reports on topics such as smoking and harm reduction, patient safety and financial incentives for healthy behavior. According to Tonya Gillis, a NICE spokesperson, these reports give NICE’s committees snapshots of public opinion on a given issue, which are taken into consideration when NICE does its work.

The Ontario Citizens’ Council’s work to date

Since being formed in 2009, the Ontario Citizens’ Council has met four times, and has produced reports on funding drugs for rare diseases, managing Ontario’s drug formulary, the values that should guide the stewardship of the Ontario drug formulary and private drug insurance.

These reports have been presented to the Executive Officer of the Ontario Public Drug Programs, who has responded to each. According to an email from David Jensen, a spokesperson for the Ministry of Health and Long Term Care, the OPDP has accepted a number of the council’s recommendations, including revisions to Ontario’s Compassionate Review Policy to provide early access to drugs that are under negotiation with the manufacturer.

The last meeting of the citizens’ council was in November of 2011. The OPDP planned to recruit 12 new council members to replace councillors whose term was up, but no new councillors were appointed in 2012. The council has not met in over a year, and the Ministry of Health and Long Term Care’s website lists no scheduled meetings for 2013.

Ongoing challenges

The council’s chair, Gerri Gershon, is pleased with the council’s work to date, saying “everyone who has been involved with the project agrees it is a good idea.” She is also aware, however, that the council has faced some difficulties. “I have a lot of criticisms,” she says.

Chief among Gershon’s concerns is confusion between the council and the government over the council’s mandate. “We have not quite found what our purpose is,” says Gershon. “In the case of the first issue the council was asked to look at – drugs for rare diseases – the decision had already been made. It was informative for the government, because we confirmed a decision that had already been made… but is that what we’re for?”

Jim Lavery, a researcher at St. Michael’s Hospital who evaluated the citizens’ council over its first two years, agrees that there is some vagueness in the council’s mandate. He also points out that many councillors have deeply held beliefs about democracy and that for many of them their selection was “a profound opportunity to speak directly to government and be heard.” As a result, he says, many of the councillors he interviewed expressed concern over whether and how the council’s reports would be used in the decision-making process.

Another challenge arose in trying to use the council to inform government decision making on breaking issues. Diane Macarthur, executive officer of OPDP, tried to gather the council on short notice last year to provide her with advice on how to respond to the introduction of generic oxycodone, but it proved too difficult for the council and government to coordinate. With councillors from all walks of life and spread across the province, mobilizing it on short notice may not be feasible, which suggests greater clarity is needed on the kind of issues the council can best address.

Also of concern to Gershon is how long it has taken the OPDP’s staff to recruit new members to the council. “It’s been incredibly slow – we’ve not met in a year. I think the council can provide really good input,” she says, “but it seems like it’s low on the scale of priorities for the government.”

Jensen insists, however, that the Ministry remains committed to the work of the citizens’ council. He writes that new councillors have finally been recruited, and that planning for a meeting in summer of 2013 is now underway.

 “A success in the making”

In spite of the challenges of its first few years, Lavery is confident that the citizens’ council is a “success in the making.”

“Despite their frustrations with some aspects of the process, everyone on the citizens’ council felt it’s a positive step for the province,” says Lavery. “There is a lot that has been done very well – the council has the independence to craft its own reports – the deliberative process was very productive.”

Excerpt from Ontario Citizen’s Council Brokered Dialogue Evaluation (Film by Wendy Rowland).

Raymond believes the citizens’ council has made important contributions to date, and that more engagement of its kind is needed. “Nearly every branch of government could benefit from this kind of work,” he says.

Janet Parsons, a researcher at St. Michael’s Hospital who co-led the evaluation of the citizens’ council believes that as with any new process, some shortcomings were identified, but that these can largely be addressed through improved communication. “Many of the concerns expressed can likely be diffused with some relatively small improvements in communication and management of the process. This would go a long way to enhancing the experience for the councillors,” she says.

Parsons hopes the process will continue: “When you look at the quality of the participation these citizens are making, it’s inspiring. They’re wrestling with incredibly difficult issues, and making very thoughtful contributions. This could be a huge benefit to the province.”

Gershon agrees, and hopes the council can get back to work soon.

The post Ontario Citizens Council: a failed experiment or a success in the making? appeared first on Healthy Debate.

The Question: Late one afternoon, my sister, who is in her 30s, started having bad stomach pains. She decided to wait it out a little. But, the pain persisted and at about 5 p.m., she decided to head to the walk-in clinic (newish to the city, she doesn’t have a local family doctor). She didn’t want to go to emergency because she didn’t think her issue was severe enough. I went with her to one walk-in clinic. While the hours on the door said open until 8 p.m., they were no longer accepting patients. It was packed in there! We went to a second walk-in clinic. They, too, were extremely busy and not accepting any patients. We drove across town to a third clinic only to find it closed entirely (out of date website maybe). So, if patients aren’t supposed to go to emergency unless it’s a real emergency and walk-in clinics are too busy to see people in the evening, what should we do?

The Answer: A leading cause of emergency department visits is due to abdominal pain. At Sunnybrook, it represents about 10 per cent of visits, according to Dr. Jeffrey Tyberg, Chief of the Department of Emergency Services. Abdominal pain is a “perfectly legitimate” reason to go to emergency and in fact, he sounded concerned your sister’s symptoms were such that she went to three walk-in clinics for help – all to no avail.

“Abdominal pain – especially in a woman – can be a serious problem,” Dr. Tyberg said in an interview. “You have to decide if it’s worth the wait. She was concerned enough that she went to three walk-in clinics.”

In your sister’s case, the cause of her abdominal pain could have been due to medical emergencies that could pose serious threats to her health and potentially threaten her fertility. They include conditions such as ectopic pregnancy, appendicitis, ruptured ovarian cysts and ovarian torsion.

“It can be something benign,” pointed out Dr. Tyberg. “But it can be something serious. Acute, severe, abdominal pain in a young woman is certainly a medical emergency and requires urgent assessment.”

Canadians make close to 16 million visits to emergency departments (EDs) each year, according to the Canadian Institute for Health Information. With abdominal pain being one of the leading causes – no precise figure is available – it constitutes a challenging component of emergency medicine.

Diagnosis is not easy and typically involves physical examination, internal examinations and an array of diagnostic tests. That’s largely because the causes of belly pain can be due to referred pain due as there are many different organs within the peritoneal cavity. Some causes include peptic disease, pancreatic, inflammatory bowel disease, gastroenteritis, biliary colic, myocardial infarction and a ruptured spleen.

Tools for examining abdominal pain are far from perfect. Though CT scans can rule out many life-threatening causes of abdominal pain and reduce the need for exploratory surgery, they sometimes don’t lead to a definitive diagnosis. They also expose patients to significant doses of radiation. Ultrasound, both at the bedside and in the diagnostic imaging department, can help determine or rule out important causes of abdominal pain, said Dr. Tyberg.

Many patients who go to Canadian emergency departments with abdominal pain leave with the comfort of knowing the cause is not life threatening but without knowing precisely what precipitated it.

While your sister was trying to be a responsible user of health services, if she visited three walk-in clinics, that was probably a sign the pain was severe enough to warrant a visit to emergency.

It would have been best if your sister had a family doctor who could have quickly seen her. Health Care Connect helps Ontarians without a family health care provider find one.

There is another service called Telehealth Ontario, where patients can obtain free, confidential advice from a registered nurse. It does not replace 911.

Another way to find a family physician is to wait until July when a new crop of them graduates and they are starting to build their practices and are open to new patients. A university’s department of family medicine, the college of physicians and surgeons in your province and in some cases, the health ministry will have that information. Below are some links to provincial sites and information on how to find a family physician.

British Columbia

Alberta

Saskatoon

Manitoba

Quebec

Nova Scotia

Newfoundland and Labrador

Yukon

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Three walk-In clinics, no family doctor and one patient with abdominal pain appeared first on Healthy Debate.

The changes are part of a culture change ushered in by a general shift in health care towards a push for greater inter-professional collaboration, with all healthcare professionals working at full scope of practice.

Denis Darby, CEO of the Ontario Pharmacists’ Association, says the role of retail pharmacists is evolving from being “the goalies of health care” (i.e., the last defense against medication errors) to one of medication experts. The OPA represents 7,600 of the province’s 13,400 pharmacists who work retail pharmacies (independents and chains), hospitals, long-term care facilities, family health teams,  businesses and government.

Clinical services can be “counted and measured”

Dispensing fees and rebates from generic drug companies—sometimes referred to by the Ministry of Health and Long Term Care as “professional allowances”— were a mainstay of retail pharmacy revenues for many years until 2006, when the MOHLTC began to significantly reduce the amount it paid for generic drugs.

Rebates were payments made by generic companies to pharmacies—the amount was typically a percentage of the amount charged to the province, private drug plans and individuals who pay out of pocket, for generic drugs. At the beginning of this month, the MOHLTC eliminated the last “allowable” rebate, which was for drugs dispensed to individuals not covered by Ontario’s drug plan.

Rebates were “an amorphous” way for pharmacists to be compensated for services, while more recent changes introduced by the province allow for pharmacists’ clinical services to be “counted and measured,” says Darby. These include a suite of payments for clinical services that retail pharmacists provide.

The uptake of the new, individually remunerated services has been gradual and in some cases uneven.

MedsCheck, a program in which the province pays pharmacists to provide an individualized review of medications with eligible patients, was introduced in 2007 for individuals taking three or more prescription medications.

Pharmacists review with the patient their medications (prescription and over the counter), and make recommendations, for example about the best time to take medications. Patients leave with a print out of their medications and notes added by the pharmacist.

New program created “workflow challenges”

The MedsCheck program initially created “workflow challenges” to busy community pharmacists, who typically had no formal appointment system for clients, and no separate private consultation room, says Lisa Dolovich, pharmacist and professor with the department of family medicine at McMaster University. (Dolovich authored a study of the program early in its existence).

In 2010, the program was expanded to include consults for long-term care residents, persons with diabetes, and home visits for homebound and chronically ill individuals on multiple medications. The annual number of claims under the MedsCheck program more than doubled between 2008/9 and 2011/12 (from 216,678 to 549,212) with the province paying $67-million for those services during the latest year, according to the MOHLTC. Payments differ for the various types of consultations—for example, pharmacists are paid $60 for a standard in-office consultation, $75 for an annual diabetes check, $90 for a consult for a long-term care resident and $150 for a home visit.

Jim Semchism, who owns an independent pharmacy in London, says one of the most valuable uses of MedsCheck is a consultation that takes place when a patient is discharged from hospital, since it is at such transition points that medication errors may occur (see for example, this examination of the risk of unintentional discontinuation of medications on admission to hospital.)

Semchism says he does between five and ten MedsChecks at day, typically for patients over 50 years old who are on between five and ten different medications.

While there has been no formal evaluation of the program, there have been reports that the program is under-utilized because pharmacists are too busy to perform MedsCheck reviews.

Health ministry is funding a study of outcomes of MedsCheck program

The ministry says it is funding a research study to look at outcomes of the program and is working with other provinces that are doing similar reviews “to leverage results wherever possible.”

In an attempt to ensure the quality of MedsChecks that are billed to the province, the province does spot audits.

The MOHLTC has not made it a requirement for the MedsCheck results to be forwarded to the patient’s physician/health care provider, however, in 2011 the province introduced the “pharmaceutical opinion program”. If, in the course of doing a MedsCheck, a pharmacist identifies an issue such as “suboptimal” prescribing, he or she can document this, for a payment, in a “professional opinion” which is shared with the prescriber.

Communication between community pharmacists and physicians/primary care providers can be sometimes be problematic, which is a function of the fact that they are rarely “co-located”, and information is often shared by fax, or through assistants, instead of directly, says Dolovich.

Ontario Medical Association president Dr. Doug Weir says that as health care professionals take on expanded roles and responsibilities, it’s important that “we also improve lines of communication between providers to ensure that the quality of care, patient safety and continuity of care are all enhanced.”

With the expansion of pharmacists’ scope of practice, the province began to reimburse pharmacists for providing services such as flu vaccinations, prescribing smoking cessation products, renewing existing prescriptions and “pharmaceutical opinions” —for example, when a pharmacist identifies and corrects a prescribing error, or refuses to fill a prescription for a customer who appears to be under the influence of alcohol or drugs.

Pharmacy technology hasn’t yet caught up with paperwork requirements

But to provide flu shots (pay for each is $7.50), pharmacists need three qualifications (first aid, CPR and completion of a course on providing vaccinations), a requirement which has deterred some from participation. By the beginning of February this year, about 2500 pharmacists had been qualified to administer the shots, according to the OPA.

Pharmaceutical opinions are clinical interventions by a pharmacist in consultation with the prescriber where the prescription may not be dispensed, may be dispensed as prescribed or a prescription therapy may be adjusted. The pharmacy is reimbursed $15 for these interventions. However, technology is not yet in place to ease the time-consuming documentation and paperwork involved in obtaining the $15 compensation for pharmaceutical opinions.

Many of the ongoing changes in pharmacy were called for in the 2008 document Blueprint for Pharmacy (and, later, its implementation plan) which aimed to “strategically align pharmacy practice with the health care needs of Canadians to ensure . . . optimal drug therapy outcomes through patient-centred care.”

The Canadian Association of Chain Drug Stores supports pharmacists’ expanded scope of practice, and will soon release a white paper with its own proposals for change. (While a CACDS spokesperson mentioned the upcoming white paper, the association declined an interview request and provided no information about the white paper proposals.)

At the same time, pharmacy education is also changing with the shift to a Doctor of Pharmacy (PharmD) as an entry level degree to practice at the pharmacy schools at the University of Toronto and the University of Waterloo. The revised program provides student with more clinical experience to prepare them for the full scope of practice.

There is growing support to have community pharmacists more integrated into the healthcare system by both reimbursing and having them accountable for drug related outcomes of their patients. However, there is a lack of evaluation of the impact of these changes on health outcomes and these changes are likely to be disruptive for both pharmacists and physicians.

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At the moment, there is considerable variation in how health care is delivered in Ontario’s hospitals, so patients with the same diseases are receiving different qualtiy of care depending on where they are treated.

To address this, the Ministry of Health and Long Term Care has embarked on a massive restructuring of how hospital are paid, with the next stage set to roll out on April 1st.

The goal of Ontario’s new approach is to improve standardization of care across the province, to ensure all hospitals are following evidence-informed best practices. In an attempt to accomplish this, the Ministry of Health is in the process of replacing a large share of hospitals’ global budgets with standardized bundled payments for what it is calling Quality Based Procedures (QBPs).

Quality Based Procedures

The idea behind QBPs is to identify certain conditions where there is currently wide variation in clinical practice, contributing to both uneven quality and costs, and to carve these out from hospitals’ base budgets. Hospitals will then receive funding to treat these conditions through a separate mechanism that ties funding to the implementation of best practices and improved quality.

Four QBPs were rolled out last year (hip replacement, knee replacement, cataract surgery and dialysis); with another six set to roll out on April 1^st (congestive heart failure, stroke, chronic obstructive pulmonary disease, elective vascular surgery, chemotherapy and colonoscopy).

QBPs are not a new idea in health care. They are a variation of what some jurisdictions call activity based funding, payment by results, or bundled payments.

Here in Ontario, the Ministry has struck an expert panel for each of the QBP conditions, which are tasked with developing best-practices for treating these conditions. “The focus of these panels is exclusively on quality,” says Chaim Bell, co-chair of the Chronic Obstructive Pulmonary Disease (COPD) panel, “we were not asked to look at costs.”

These panels are made up of health care professionals from both academic and community hospitals. They have been asked to review the best available international evidence, along with data from Ontario’s Institute for Clinical Evaluative Sciences, in order to develop standardized care pathways based on best clinical practice.

Care pathways are tools used in health care to improve standardization. They are a sort of map, which plot out a patient’s journey through the health care system. A care pathway for COPD, for example, would determine whether a patient’s condition should be considered mild, moderate or severe, based on the patients’ specific symptoms. Then, based on this initial classification, the pathway would further define which treatments should be used, as well as criteria to evaluate whether a treatment was successful, and if treatment was unsuccessful, which treatment should be offered next.

Creating care pathways does not mean that all patients must be treated the same. Doctors can deviate from a pathway if a patient’s specific condition requires it, but existence of a pathway and accompanying checklists requires that this variation be documented, which helps ensure that the variation is for a good reason.

Bob Howard, CEO of St. Michael’s Hospital believes this approach to standardization is an important step in the right direction, saying “when you improve standardization, you instantly improve quality. Everyone on the care team, including the patient, knows what’s supposed to happen.” When everyone on the team knows what the best practice is, it’s easy to spot and correct deviations from the pathway.

“The devil is in the details”

Improving quality through the development of care pathways based on best-evidence has broad support within the health care system. Where the road begins to get rocky is the effort to connect hospital funding to quality outcomes. “Everyone supports the goals of QBP,” says Ken Tremblay, CEO of Peterborough Regional Health Centre, “but the devil is in the details.”

These details include a deficit of measurable quality indicators and limited evidence on best practices for some procedures.

For payments to be effectively tied to quality, both processes and outcomes must be continuously measured in Ontario’s hospitals. But in many cases hospitals are not measuring relevant quality indicators. According to the clinical QBP guidebook from the COPD expert panel, the indicators of patient outcomes currently measured by hospitals, which include COPD admission rates and length of stay, “do not measure the quality of care provided.”

Further, according to the expert panel, process indicators that could potentially be developed using existing data, such as use of noninvasive ventilation for COPD patients, have not been validated. Validated process measures from other jurisdictions, such as spirometry testing and access to pulmonary rehabilitation, have not been developed in Ontario and would require entirely new data collection systems.

Also challenging is that not all of the conditions identified as QBPs have the same quality of evidence available upon which to base best practice care pathways. According to David Alter, co-chair of the Congestive Heart Failure expert panel, there is significantly less definitive evidence for standardized treatment of congestive heart failure than for cataract surgery or hip replacement.

However, as significant as these challenges are, Alter emphasizes that these are not deal-breakers. “Getting to this stage, where we have evidence-based recommendations, wasn’t easy – there were a lot of challenges, but nothing valuable is easy. We can meet these challenges if we keep working at them,” he says.

Could cost control trump quality improvement?

Using QBPs to standardize quality across the province is challenging enough, but they are also meant to standardize costs.

Originally, the plan for QBPs was to determine the price of providing the best practice care pathway, and to pay hospitals for each patient they treat through this pathway. Thus all relevant costs required to provide the best practice care pathway (nursing costs, imaging, food, laboratory work, etc.) would be calculated and bundled so that hospitals would receive an appropriate payment for providing standardized, high-quality care.

However, despite the scheduled April 1^st roll-out for the six new QBPs, the quality based pricing is not in place for all of them, admits Susan Fitzpatrick, the Assistant Deputy Minister at the Ministry of Health responsible for QBPs. “Currently the six expert panels are all at slightly different stages of execution,” she says, “we thought we’d get their best practice guidelines in time to do micro-costing on the care pathways. That has not been able to be done in every case.”

Nevertheless, the carve-out of hospitals’ global budgets is set to go ahead. While hospitals will receive bundled payments for QBP services, the prices for these bundled payments will be based on the average cost of providing a QBP service in Ontario at the present time, rather than on the price of following best practice.

Fitzpatrick believes that the combination of being paid the average price along with monitoring of quality indicators identified by the expert panels will prompt hospitals to start looking at how they can implement best practices.

However, others worry that until payments are tied to actually providing best practices and improving quality, it is unclear whether these new bundled payments will successfully promote quality, or whether they will simply promote cost control as some hospitals struggle to get their costs down to the average.

QBPs the first of many steps – process will be “hard, but necessary”

Changing the ways hospitals are financed is only one step on the path of improving quality in a health care system. “This is a first step,” says Fitzpatrick, “the expert panels are still constituted and one of the next steps for them is to look beyond hospitals to how care is provided in the community.”

“In order to truly transform the system, we have to be bold” says Garth Matheson, a Vice President at Cancer Care Ontario which is responsible for three QBPs. “Look, this is going to be a bumpy road, and things aren’t going to change overnight… but this is how we actually improve the whole system.”

Bob Howard agrees. “The bottom line,” he says, “is that hospitals know this process is going to be hard, but also know that it is necessary.”

The post Will more finance reform improve quality in Ontario’s hospitals? appeared first on Healthy Debate.

The Question: I suspect I have acral melanoma on my foot and I want an excision biopsy done. Most family practitioners are unaware of what it is, and they simply did not know what it is. I waited for a long time and saw a dermatologist who wasn’t sure what it is either. He said it’s a birthmark even after telling him that I only had it for 1.5 years and it grew over the period of time. After reading some suggestions from melanoma survivors (who strongly think this doesn’t look good and need to be removed), I am trying to get an excision biopsy from a melanoma specialist, regardless of what it is for peace of mind.

The Answer: Right off the bat, doctors will tell you any new lesion is worrisome – especially one that is growing – and that it definitely needs to be seen. I like that you have reached out to melanoma survivors for advice and it sounds like they have been able to confirm for you that this mark on your foot looks suspicious.

The only part of your question that gives me pause is that two physicians have already seen and dismissed it – your family physician and a dermatologist, the latter of whom would be particularly well placed to spot a suspicious lesion. I do think you are correct to pursue a biopsy as you require a definitive answer only a biopsy can provide that to you. Your preference for a total removal of the lesion for “peace of mind” may be extreme, given that the growth is on the foot and if it’s large, it could involve a skin graft or a rotational flap to reconstruct the area, according to Frances Wright, a surgical oncologist at Sunnybrook, who specializes in melanoma.

“He needs to have someone look at it,” Dr. Wright said in an interview. “If it needs a biopsy, then it may need to be an incisional biopsy (removing the most suspicious area) rather than an excisional biopsy (removing the whole area) to minimize the morbidity of the reconstruction. Most general surgeons can biopsy the foot.”

There are four major types of melanoma: superficial spreading, which is the most common making up 70 per cent of all diagnosed cases, nodular, lentigo maligna and acral lentiginous, the latter of which accounts for about five per cent of all diagnosed melanomas. [Nodular melanoma accounts for 15 per cent of cases, while lentigo maligna represents 10 per cent of cases].

The type you wrote about – acral lentiginous melanoma – is a common form of melanoma in Asians and those with dark skin. It is sometimes referred to as a “hidden melanoma” because the lesions occur on parts of the body that are typically not easy to examine – or that even one necessarily thinks to examine. These melanomas present on the palms of the hands, soles of the feet and mucous membranes, including those that line the mouth, nose, female genitals, anus and underneath or near the toenails and fingernails.

In your case, the lesion has appeared on the sole of your foot. Typically, melanoma looks like a black spot. Sometimes people mistakenly believe the mark is due to bruising or a recent injury.

Doctors are taught the classic signs of a melanoma are asymmetric lesion, irregular borders, change in colour or multi-coloured, diameter >6mm or ulcerated/ bleeding.

“If it looks suspicious, you need to do a biopsy,” said Dr. Wright, associate professor of surgery at University of Toronto. “Something new that is changing can be worrisome. In the end it’s going to be a discussion between the physician and the patient on how worrisome it is.”

Sunnybrook’s Odette Cancer Centre is the only place in Canada that has a pigmented skin lesion clinic that runs every Monday. There, you can have your suspicious lesion looked at by a dermatologist and an oncologist, if need be. You can access it if you are referred by a family physician through our central referral fax number 416- 480-6179 or referral telephone number 416-480-4205.

“The majority – 70 per cent of melanomas, – present with a depth of less than 1 mm and have a very good outcome,” according to Dr. Wright. “There are a proportion of melanomas that do present deeper and can be life threatening.”

Another alternative is that you return to your family physician and ask to be referred to a general or plastic surgeon to do a biopsy and if necessary, have it removed. Many dermatologists perform these biopsies as well.

I agree you need to vigorously pursue this, get a biopsy and a definitive finding. The biopsy alone will likely give you that peace of mind you seek.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Suspicious skin lesions and melanoma appeared first on Healthy Debate.

Private investors, construction trades and companies, as well as the province and the city all stand to make money from a casino. The Ontario Lottery and Gaming Corporation (OLG), a crown corporation, is pushing hard for a casino in Toronto and said it would pay Toronto double the “hosting fees” it gives to other municipalities. However, Ontario Premier Kathleen Wynne rebuked the OLG for making that offer, and stated that all municipalities should be treated the same.

Meanwhile, a Toronto Public Health (TPH) report warns that building a casino in the city could “exacerbate social inequalities” and increase the frequency and severity of problem gambling in the city.

Problem gambling is not generally viewed as a health problem or, when it is severe, as a legitimate form of addiction, says Wayne Skinner, deputy clinical director of addictions programs with the Centre for Addiction and Mental Health (CAMH).

Partly as a result of this, and because gambling still carries a stigma, research indicates that a relatively small proportion of problem gamblers seek treatment, he says. “We have a longer understanding of  other substance abuse problems …yet neurobiology shows that it [gambling addiction] is a bit like being on stimulant drugs.”

Youth, seniors, relatively poor particularly vulnerable to problem gambling

Problem gambling is  “gambling behaviour that includes continuous or periodic loss of control over gambling; preoccupation with gambling and money with which to gamble; irrational thinking; and continuation of activity despite adverse consequences,” according to a Canadian Public Health Association definition.

Youth, seniors and those of lower socio-economic status are particularly vulnerable to problem gambling, as are newcomers and immigrants to Canada, according to research cited in the TPH report on the health impacts of gambling expansion. (Toronto Public Health has released four reports on the casino, including one that focuses on mitigating the negative effects of gambling.)

That gambling is regressive—it imposes a greater financial burden on lower socioeconomic groups— is evident in Statistics Canada’s latest report on gambling.

The poorest 20% of households spend a considerably higher proportion of their income on gambling than the highest 20% (2.7% compared to 0.5%), according to the households that reported to the federal agency.

The prevalence of problem gambling in Ontario (the term encompasses a continuum from those at moderate to severe risk) is between 1.2% and 3.4% of the population, according to Toronto Public Health.

Based on community surveys, the most severe form of problem gambling affects 11,000 people 18 years and over in the Greater Toronto Area (0.2% of the population) and another 129,000 GTA adults are deemed at-risk gamblers, the TPH document states.

In 2000, the CAMH established the Problem Gambling Institute of Ontario, which offers treatment to individuals and training for people who work in the gambling field (to help them identify problems).

Risk factors for serious gambling problems

CAMH researcher Nigel Turner says that Individuals at risk for serious gambling problems typically have one or more of the following risk factors: having had an early or big win, or a focus on money; erroneous beliefs about gambling, such as that “randomness corrects itself”; impulsivity or risk taking behaviour; and emotional vulnerability, such as anxiety or depression.

Turner has published widely on gambling issues and says gambling is often called “the most expensive addiction” because, compared to other addictions, much more money can be lost while in an “intensely stimulating gambling trance.”

But he also notes that the problems caused by gambling are “individual disasters which are not particularly public.” As a result, society at large is not particulary aware of some of the negative impacts of gambling.

Individuals who seek treatment for problem gambling at CAMH tend to also have other, concurrent, addictions, says Skinner. A recent systematic review, for example, concluded that more than 50% of problem gamblers have a substance use disorder.

The OLG aims to target younger gamblers

In its 2012 blueprint for modernizing gambling, the OLG makes clear its goals: to expand gambling in the province, maximize private sector involvement, and target a younger population in order to increase revenues.

Locating a casino in Canada’s largest city is particularly enticing to the OLG, which states in the blueprint document that “consumer interest” in gambling is not being met in the Greater Toronto Area.

More than 3 out of 4 “gamers” were 50 years old or older in 2008-09, the report states, and while slot machines are a major revenue source for the OLG, adults under 45 years of age prefer “black jack and poker” to slot machines, the report states.

And fully 88% of the Ontario Lottery and Gaming Corporation’s  “land based” revenue now comes from slot machines—a form of gambling that many researchers have shown is particularly addictive.

Slot machines particularly addictive

About 15% to 20% of slot machine players are deemed “problem players”, and 60% of slot machine revenue in Ontario comes from problem gamblers, according to Kevin Harrigan, a computer science professor with the University of Waterloo’s gambling research lab.

Slot machines can be set up to fool the human mind. For example, the Alcohol and Gaming Commission of Ontario permits slot machines to be programmed so that “near wins” occur 12 times more often than would be dictated by chance, Harrigan explains. Other jurisdictions, such as Australia, put stricter limits on the number of allowable near wins, he says.

Harrigan has co-authored extensive research on gambling, including a study showing that most “wins”, that slot machines flash to celebrate, are in fact losses (as when a person bets $1 but wins 20 cents), and that gamblers react physiologically as if these losses are wins.

Gambling activity in Canada increased substantially in the 1990s after a 1985 amendment to the Criminal Code of Canada allowed provinces to “manage and conduct” electronic forms of gambling. In 2000 the Canadian Public Health Association started to ring alarm bells when it issued its position paper Gambling Expansion in Canada, An Emerging Public Health Issue.

But growth has recently stalled, according to the OLG blueprint document, in part due to competition from other forms of entertainment.

Measuring the social and economic impacts

OLG-sponsored gambling contributed $2 billion to the province in 2010/11, according to the corporation’s annual report. But attempts to measure the risks and benefits of the activity in terms of overall public good is a complicated pursuit, as is evident from The Social and Economic Impacts of Gambling, an extensive 2011 report written for the Canadian Consortium on Gambling Research.

The overall impact of gambling depends on a number of variables, including where the casino is located, and when the impacts are examined. For example, while destination casinos in economically challenged areas can have economic benefits for the host city, positive economic effects are “muted or mixed” in more economically robust areas.

Casinos have the greatest potential to increase crime and, because they offer continuous forms of gambling, have a greater addiction potential than other types of gambling such as lotteries, it states.

Problem gambling, which is associated with bankruptcy, divorce, suicide and treatment issues, is the health effect that gets the most attention. The OLG spends $49 million a year, according to its latest annual report, to support problem gambling prevention, treatment and research.

Only a minority of problem gamblers seek or receive treatment and “only a minority have police/child welfare or employment involvement,” states the Social and Economic Impact report.

Robert Williams, a leading gambling researcher at the University of Lethbridge, co-authored a 2012 document, prepared for the Ontario Ministry of Health and Long Term Care, titled Prevention of Problem Gambling: A Comprehensive Review of the Evidence and Indentified Best Practices.

CAMH’s Turner says education about how games work, and about coping skills, are two major approaches to preventing gambling problems, but their long term efficacy is difficult to measure.

One tool for mitigating problems (for those who have developed them) is when gamblers “self exclude” from casinos. But the OLG has a poor record of enforcing such self exclusion and a $3.5-billion class action suit has been launched against the OLG on behalf of 10,000 gamblers, according to a 2009 Globe and Mail feature.

The city’s Board of Health opposes a casino, several Toronto Public Health documents outline the public health concerns, and a citizen’s group, No Casino Toronto, has been bringing attention to reports of community health impacts.

Public Health Ontario held grand rounds to address the issue of the expansion of casinos in Ontario, but has not taken a position on the matter. But many medical officers of health, such as Dr. Rosana Pellizzari in Peterborough, have raised concerns about the downside of casino expansion.

Toronto City Council will soon vote on whether or not the city should have a casino.

The post Toronto casino would mean more problem gamblers, more “individual disasters” appeared first on Healthy Debate.

The Question: I am a 66-year-old male in good physical condition with great annual check-up results and not on any medication. Yet, 7 months ago, I was hospitalized after blacking out twice and was diagnosed with a DVT in the left arm. Following 6 months of anticoagulation with warfarin, my hematologist recommended I stop taking it. Since no cause for my arm DVT was established, my risk of another DVT remains a great concern to me. How does one find and consult medical professionals who are experts in Thrombosis? My GP has had difficulty even finding such an expert to refer me to.

The Answer: You ask two important questions: Why do people sometimes develop thrombosis or abnormal blood clots in arm veins? And how does one find a doctor who specializes in thrombosis?

With respect to your specific circumstances, Dr. Geerts, a thrombosis specialist at Sunnybrook Health Sciences Centre, stated that arm DVT and blacking out spells are almost never directly related. These are nearly always related to separate causes.

Arm DVT is usually not a dangerous condition and the symptoms are usually not severe. Arm DVT results in swelling and discomfort of the arm sometimes with a dusky skin color. The cause of arm DVTs can usually be determined, according to Dr. Geerts, with the overwhelming majority being due to the use of a central venous line or a pacemaker inserted into an arm vein. The second relatively common cause of arm DVT is called thoracic outlet syndrome which occurs because of compression of the arm vein near the shoulder as it passes through the thoracic outlet, the space between the upper ribs and the collarbone.

An arm DVT is treated with anticoagulants given anywhere from a few weeks to indefinitely depending on the specific patient’s circumstances. “There is no evidence that aspirin provides any protection against recurrent arm DVT,” according to Dr. Geerts “and I do not use aspirin for this purpose.” “Although there are no tests that can be done to predict your risk of another arm clot,” stated Dr. Geerts, “it is important to try to determine the cause of the arm clot since this may influence the treatment duration.”

In response to your second question, there are only 30-50 physicians in Canada who specialize in Thrombosis. There are one or more thrombosis specialists associated with most of the medical schools in the country. If you are living in Ontario, your family doctor can FAX a referral to the Sunnybrook Thrombosis Clinic at 416-480-5153.

There are also a number of web sites related to thrombosis, including Lifeblood, the UK thrombosis web site, National Blood Clot Alliance and Vascular Disease Foundation. Web site links on all these organizations are at the bottom of this email.

Thrombosis Canada is an organization of Canadian health professionals dedicated to the prevention and treatment of thrombotic disorders as well as to providing education to other health professionals, patients and the public. A completely revised Thrombosis Canada website will be launched in the spring of 2013.

The Thrombosis Charity

The National Blod Clot Alliance

This Is Serious

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Blood clots and blacking out spells: are they related? appeared first on Healthy Debate.

However, while provinces have poured resources into improving access, they have paid relatively little attention to measuring outcomes of these surgeries. The result, experts believe, is that some patients may be undergoing surgery when it is not appropriate for them, with lower chance of improvement and higher risk of complications.

Of particular concern is total joint replacement surgery for hips and knees. These surgeries are very effective when performed on older patients with significant pain and disability, but are increasingly being used in healthier, younger patients for whom they may not provide as much benefit. (Similar concerns have been raised about cataract surgeries performed on patients without significant visual impairment.)

While Canada does have a national joint replacement registry, participation is still voluntary in most provinces and it does not track patient reported outcomes, such as pain and disability reduction.

The failure of Canadian provinces to routinely measure patient reported outcomes raises important questions about whether patients are receiving sufficient information about the expected risks and benefits of hip and knee replacement surgery to make informed decisions about whether these surgeries are right for them.

Hip and knee replacement

Total joint replacement surgery is used to treat osteoarthritis, the most common joint disorder. Osteoarthritis occurs when the cartilage in a joint breaks down or wears away, so that bones rub directly on one another. It can be very painful and can cause serious disability.

There are a range of treatments for osteoarthritis, including medications to manage pain and physiotherapy to increase muscle strength and range of motion in affected joints. But when these treatments are not effective, hip and knee replacement surgery has been shown to provide significant relief from symptoms for many patients.

However, much of the research on the effectiveness of hip and knee replacement surgery has been done on patients over the age of 65. There has been significantly less research into the effectiveness of these surgeries for patients under 55 and over 85, says Robert Bourne, an orthopedic surgeon at the University of Western Ontario.

“The question of appropriateness isn’t whether surgery is effective in the target population,” says Bourne. “The question is whether surgery is as effective for the very young and the very old.”

Despite risks, join replacement on the rise among young patients

According to data from the Canadian Institute for Health Information (CIHI), the rate of patients aged 45 to 54 receiving knee and hip replacement has increased sharply over the last decade. Between 1997 and 2007, the rate of knee replacements for patients aged 45-54 more than doubled for males and more than tripled for females.

This growth is concerning, because evidence is beginning to emerge that the complication rates may be higher for younger patients undergoing joint replacement surgery. Data from Australia shows that the rate of revision for total knee replacement for patients under 55 is more than double that of older patients.

“Revision is the clinical term for re-replacement” says Cy Frank, the incoming CEO of Alberta Innovates Health Solutions, “It’s a disaster from everyone’s perspective when someone needs to have their surgery redone.” This is because the risks of revision surgery are much higher, he explains. These risks include serious infection and potentially fatal blood clots. Frank also emphasizes that the benefits are lower when a joint surgery needs to be redone. “When these surgeries need to be repeated, especially with knees, they’re much less likely to meet patients’ expectations,” he says.

It is not yet entirely clear why younger patients appear to be so much more likely to undergo early revision surgery, but Gillian Hawker, a rheumatologist at Women’s CollegeHospital, speculates that it may be linked to the desire of younger patients to maintain their active lifestyles. “We seem to be seeing more young people who are seeking out this surgery so they can continue to do high impact sports like hockey or skiing, but the prosthetics used in these surgeries were never designed to hold up to that kind of impact” she says

Even if younger patients do not require revision, research suggests they may nonetheless be at higher risk of being dissatisfied if their expectation was that the surgery would allow them to continue to safely play a high impact sport, when in fact it does not.

Also of concern is that younger patients may have less pre-operative pain and disability than older patients. As a result, they may see much less improvement than older patients, leading to greater rates of dissatisfaction. However, because Canadian surgeons do not routinely measure patient oriented outcomes like pre-operative pain and disability, patients must decide about whether to have surgery without all the information they need to make an informed decision.

Measuring patient reported outcomes

Canada has had a national joint replacement registry that collects demographic and clinical information about knee and hip replacement surgery since 2001. However, the registry is largely voluntary; in 2012 Ontario and British Columbia became the only two provinces to mandate participation. The largely voluntary nature of the registry means there is a risk of bias in the data, which limits its usefulness.

While CIHI makes raw data from the registry available on its website, this data is not in a form that is useful to either patients or surgeons. CIHI has not released an annual report based on registry data since 2009.

But perhaps most importantly, Canada’s registry does not measure patient reported outcomes, such as reduction of pain and disability or improvement in quality of life, which are the primary goals of hip and knee surgery.

There are many validated clinical tools available to measure patient reported outcomes, such as the Oxford Hip Score and the Canadian designed Western Ontario and McMaster Universities Arthritis Index. Wider use of tools like these, Hawker believes, would help provide patients with more complete information about whether joint replacement surgery is an appropriate treatment for their condition. If surgeons begin routinely measuring a patient’s pain and disability before surgery, this information can be compared  with other people who have had successful surgeries, so the patient and their surgeon can evalute together whether the patient is likely to benefit from surgery.

Hans Kreder, an orthopedic surgeon at SunnybrookHospital, agrees: “It’s important to measure quality from the patient perspective, not just process measures.” Kreder believes the main barrier at this point is cost. “It’s expensive,” he says, “contacting all those patients, getting them to fill out forms, that costs money.” But he believes technology is rapidly making such quality monitoring affordable. “Where at one time we would have had to follow up with patients over the phone, technology is such now that with appropriate consent and privacy measures, we can do this quickly and cheaply online,” he says.

Canada lags behind international jurisdications

Canadian provinces lag well behind jurisdictions like Sweden, the United Kingdom, and parts of the United States in measuring patient reported outcomes. Sweden has been operating a national knee replacement registry since 1979, and introduced patient reported outcome measures focusing on quality of life in 2002. Annual reports based on this registry are published online every year.

Stefan Lohmander, an orthopedic surgeon at LundUniversity in Sweden, says the Swedish registry has been invaluable in improving the quality of surgery across the country. “Surgeons and clinics get data on their outcomes so that they can compare themselves to national data,” he says. The Swedish registry has also allowed researchers to identify patient groups who are at higher risk of poor outcomes, including younger patients, says Lohmander.

Lohmander also credits the registries in Sweden, the United Kingdom and Australia with allowing for early identification of problems with certain implants and surgical techniques, such as the metal on metal hip implants discussed recently in the Globe and Mail.

The United Kingdom has also been collecting patient reported outcome measures since 2009. According to research published in the British Medical Journal, the United Kingdom is using these measures in “assisting clinicians to provide better and more patient centred care; assessing and comparing the quality of providers; and providing data for evaluating practices and policies.”

 Challenges to effective measurement

International experience suggests that there are a number of important challenges to successfully integrate patient reported outcomes. Cost is one important consideration. While web technology can reduce costs in theory, in practice it appears that many patients are still more likely respond to paper based surveys.

Patient participation is also essential if patient reported outcomes are to be measured successfully. Older, sicker, and marginalized patients may find it difficult to participate in outcome measurement, particularly if such measurement is web-based.

Perhaps most concerning is the potential for misuse. Black writes in the British Medical Journal that patient reported outcome measures could be “used crudely to ration care.” While some patients will not benefit from surgery, he cautions that these measures have not yet been shown to accurately identify these patients pre-operatively.

While these and other challenges cannot be overlooked, they must weighed against the status quo in Canada, where surgery is more accessible than ever, but patients may not have all the information they need to make an informed decision.

The post Increasing access to surgery without considering appropriateness leaves patients in the dark appeared first on Healthy Debate.

The Question: Does OHIP cover all of the costs associated with valve replacement surgery?

The Answer: The short answer is yes, the Ontario Health Insurance Plan does cover the cost of all aortic valve replacement surgery – something that is true across Canada. The operation is typically done on those with narrowed or leaking aortic valves, due to a congenital condition or a disease acquired in later life. The valves can be mechanical or bio-prosthetic and made of porcine, equine or bovine material.

“The mechanical valves require lifelong anticoagulation [treatment with so-called blood thinners] while bio prosthetic valves typically don’t. On the other hand bioprosthetic valves typically wear out in the 10 to 20 year range, requiring a repeat surgical procedure,” said Dr. Sam Radhakrishnan, director of Sunnybrook’s catheterization laboratory.

There’s a newer type of minimally invasive valve replacement available, called transcatheter aortic valve implantation [TAVI], now being funded by the Ontario government. It is offered to patients who are ineligible for open-heart surgery because their risk of death or developing severe disability post surgery is deemed too high.

Patients eligible for TAVI suffer from severe aortic stenosis, an increasingly prevalent disease among the elderly. With the onset of significant symptoms, particularly progressive shortness of breath, severe uncorrected aortic stenosis carries with it a death rate of up to 50 per cent over the next two years. The average age for the TAVI procedure at Sunnybrook has been 83.

In addition to Sunnybrook, five other hospitals in Ontario – University Health Network, Hamilton Health Sciences Centre, St. Michael’s Health Sciences Centre, the University of Ottawa Heart Institute and London Health Sciences Centre – are being funded to perform the minimally invasive operation on a pilot basis over the next three years, according to Ontario health ministry spokesman David Jensen.

To cover the cost of the new operation, Ontario is providing an additional $15,000 per case, bringing the total reimbursement for the TAVI procedure to $35,000 – the same amount funded by the British Columbia Ministry of Health, said Mr. Jensen.

The procedure involves inserting a replacement valve made of porcine or bovine tissue mounted on a metal frame, into the diseased aortic valve. The procedure is done with fluoroscopic (X-ray) guidance and often can be accomplished through an incision in the groin that is less than half an inch.

According to results of the Placement of Aortic Transcatheter Valves trial [PARTNERS], in patients who were not candidates for conventional open-heart surgery, TAVI provided a survival benefit over medical therapies. “In this trial, for patients who were deemed inoperable, performing TAVI led to a substantial reduction in the one year rate of dying or being rehospitalized for heart failure. Indeed, for just about every three patients treated with TAVI compared to medical therapies alone, one life was saved or repeat hospitalization prevented.” In patients who were deemed high risk for a conventional operation (but operable) those who underwent TAVI had virtually the same survival rates at one year as compared to patients who had open-heart surgical repair. However, in this trial the stroke rate was higher for the TAVI patients at 30 days and again at one year compared to those that underwent open-heart surgery.

“There’s no doubt the recovery with TAVI is a lot faster,” said Dr. Radhakrishnan, noting that patients spend seven to eight days in hospital compared to almost two weeks for open-valve replacement in these higher risk patients.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Which heart valve operations are covered in Canada? appeared first on Healthy Debate.

International attention has far outstripped domestic attention for a surge of public health-related alcohol research coming out of the University of Victoria’s Centre for Addictions Research of British Columbia (CARBC), the Canadian Centre on Substance Abuse (CCSA), and the Toronto-based Centre for Addiction and Mental Health (CAMH).

A BC study published last month in the journal Addictions received coverage from the BBC, the Sydney Morning Herald and Reuters, but only minimal exposure in Canadian media.

That research suggested that a 10% increase in the average minimum price for all alcohol beverages in British Columbia might be associated with as much as a 30% drop in deaths wholly attributed to alcohol such as alcohol psychoses, alcoholic cardiomyopathy and alcohol-induced pancreatitis.

According to the World Health Organization, alcohol is ranked second only to tobacco as a leading factor in death and disability in high income countries, and many public health officials feel alcohol-related harm has been downplayed by governments.

Canadians are above average consumers of alcohol

Canadians consume about 50% more than the global average–an estimated 9.8 litres of pure alcohol per capita annually, more than the average of  6.1 litres of pure alcohol annually, according to research published this month in Addictions.

Canadian research published last October in the American Journal of Public Health revealed trends similar to those in BC after Saskatchewan introduced some new and some increased minimum prices in 2010.

A 10% increase in alcohol prices in  Saskatchewan led to an 8% decrease in consumption of spirits, wine and beer, according to the research that covered the period from 2008 to 2012.

In a 2010 press release, the province explained the intent of the price increase was to reduce the over-consumption of products with high alcohol content and raise money for provincial coffers. (Consumption in next-door province Alberta remained unchanged over the same period.)

Canadian research is being closely watched in the United Kingdom because a very political debate about alcohol pricing is raging in Scotland, explains Professor Tim Stockwell, director of CARB and co-author of the research cited above.

In Scotland, private retailers such as supermarkets and petrol stations sell alcohol, and prices are lower and alcohol consumption is about 50% higher than in Canada, he notes.

Alarm about alcohol misuse prompted new pricing law in Scotland

Widespread concern about alcohol misuse led the Scottish parliament to introduce legislation to set a minimum price of 50 pence per unit of alcohol (a pint of beer has about 2.3 units of alcohol), and British Prime Minister David Cameron has mused about introducing a similar policy. His government has already examined the issue.

In a sense, politicians in the United Kingdom are playing catch up, because in Canada most governments are the major alcohol retailers and “it’s easier to influence price when you have monopoly on sales,” notes Stockwell.

Alcohol retail sales are also private in the United States and Australia. In contrast provincial and territorial governments in Canada—with the exception of Alberta, which has a completely private retail sales structure—are the leading retailers of alcohol and hence already “have direct control over almost all aspects of alcohol pricing policy,” according to the 2012 CCSA report Price Policies to Reduce Alcohol Related Harm in Canada.

Ontario opposition leader Tim Hudak has said that if elected his party would end the Liquor Control Board of Ontario’s monopoly and open up retail sales to the private sector.

Three main pricing policy levers are available to Canadian jurisdictions—setting minimum prices, adjusting prices based on alcohol content, and indexing prices to inflation.

Canada well positioned to employ pricing levers

Provinces and territories employ those pricing policy levers to varying degrees, as shown in today’s sidebar.

Federal, provincial and territorial governments, and manufacturers, benefit from alcohol price increases, and there’s lively discussion among those parties when it comes to pricing policy, Stockwell says.

“But from a public health and safety point of view it doesn’t matter who collects the money, who gets the profits,” says Stockwell. Price increases are “a win-win for everyone—government will make more money, the policy saves lives, and crimes are prevented.”

All the pricing strategies in the 2012 CCSA document were supported in the 2007 recommendations for a National Alcohol Strategy. Stockwell adds that Ontario has been “particularly supportive” of pricing recommendations, and Quebec has also expressed interest.

The toll of excessive alcohol consumption

Go to any Alcoholics Anonymous meeting, or wander the wards of any hospital, and the human toll of excessive alcohol consumption is brought home with a vengeance. Families and careers destroyed, children scarred, and health seriously impaired.

But if overall, population-level alcohol consumption can be reduced when prices are raised, what is the best way to target the heavy drinkers who can cause such havoc to themselves and others?

The authors of the CCSA report speculate that setting minimum prices may be “especially effective” in targeting higher risk drinkers who tend to purchase lower priced alcohol.

Occasional binge drinking can cause “substantial” harm

But the CCSA report also notes that “a substantial amount of harm comes from the relatively large number of moderate-risk drinkers who only occasionally drink in risky ways” such as occasional binge drinking.

And researchers say more study is necessary to determine, for example, what impact the application of price-increase policies will have on low-income problem drinkers and on younger drinkers who are known to “pre-drink” before going to restaurants and bars where alcohol is costlier.

The Ontario Ministry of Finance indexes prices regularly, but is cautious about the possible impact of  further price increases. “Significantly increasing prices beyond current levels could encourage unwanted behaviours such as smuggling or greater uptake of home production or u-brew/u-vint production,” states a presentation by ministry policy analyst Barbara Hewett to an Alcohol Pricing Research Forum held at CAMH last December.

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The Question: My Godfather was diagnosed with neuroendocrine cancer a couple of weeks ago. He went into hospital with stomach pain and had emergency surgery for a tumor obstructing his bowel. They removed his appendix, which was full of cancer. They are still waiting on answers and a treatment plan. Here’s the problem: they’re in a small city that only has two oncologists and no specialists. The normal course of action is to wait until your file gets to the top of the pile and they bounce you to a specialist in London or Toronto. Is there anything my godfather can do on his own to expedite his treatment? I’m not sure what to tell them his options are – maybe waiting is just what he has to do. If you have any suggestions, I’d be grateful to be able to pass them on.

The Answer: The neuroendocrine system is made of a network of specialized, nerve-like cells that can produce and release hormones into the blood stream. Neuroendocrine tumours are relatively rare and can present anywhere in the body but more commonly in the small bowel, rectum, appendix, pancreas or stomach. Half of these tumours secrete hormones such as serotonin that, in turn, have the potential to damage heart valves.

Since the symptoms – bloating, wheezing, flushing, diarrhea, persistent cough and loss of appetite to name a few – can be vague or generalizable to other medical conditions, it can take up to three years before patients are accurately diagnosed, according to Simron Singh, medical oncologist and co-head of The Susan Leslie Clinic for Neuroendocrine Tumours at Sunnybrook. Sometimes there are no symptoms until a patient is seen in emergency, which is consistent with your Godfather’s situation.

“Every month, we see cases just like what is being described,” said Dr. Singh, who co-heads the largest neuroendocrine clinic in Canada, at Sunnybrook’s Odette Cancer Centre, seeing about 200 new patients each year, plus up to an additional 400 in follow up. “Treatment is very individualized.”

You may recall that Steve Jobs, entrepreneur, inventor and co-founder, chairman and CEO of Apple Inc. was diagnosed with islet-cell neuroendocrine cancer, which manifested itself in his pancreas. He initially resisted recommendations for mainstream medical intervention, instead consuming an alternative medicine diet, that, according to Harvard research associate Ramzi Amri, “eventually led to an unnecessarily early death,” he was quoted as saying in the Daily Mail. Though Mr. Jobs did eventually pursue conventional medical treatment, including surgery, he died in October 2011 due to a relapse of his condition.

Due to its rarity and complexity, I would suggest your Godfather obtain an opinion from a cancer centre that has extensive expertise in the treatment of these tumours. That does not mean he has to leave his community oncologist – only that he obtains a treatment plan from an experienced cancer centre that can likely coordinate his treatment and ensure the best possible outcome. In short, there is nothing to lose and everything to gain from an extra set of expert eyes.

“For patients outside of Toronto, this one visit can allow us to create a personalized plan that the patient can share with their oncologist,” said Calvin Law, head of the cancer surgery program at Sunnybrook, who has operated on many patients with neuroendocrine cancer. “Some can receive therapy closer to home.”

Your Godfather may or may not need more treatment. His treatment plan will involve a detailed analysis of the pathology of the tumour, specifically reviewing the type, size, grade, plus any additional complications. They may want to do an octreotide scan, which allows doctors to see inside the body to locate the tumour and determine if it has spread elsewhere in the body. As well, doctors would likely do a pathological test called Ki-67, which if high, suggests the cancer is aggressive. Depending on other features, your Godfather may require more surgery.

Specific diagnostic tests, pathology work and treatment must be carried out in sequence for it to be most effective. At Sunnybrook, for example, patients have one appointment with three doctors – a radiation oncologist, medical oncologist and surgical oncologist – who then devise a treatment plan.

“Sometimes there is more information that we need,” Dr. Law, says “but at the very least, we provide you with an organized plan moving forward.”

Though half of all cases of neuroendocrine cancer are detected when they have already metastasized or spread, there are surgical options for cases that are “very advanced or very early,” he said.

There are also clinical trials – new treatments – for eligible patients who wish to be enrolled.

“Not only are there a lot of options,” says Dr. Law, “the sequence and combination of treatments are the keys to success.”

According to Dr. Law, the prognosis is generally good; adding “if you catch it early, there is a real potential for cure.”

To have your Godfather referred to a centre in Toronto or London, he would need to request a referral from his family physician.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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The initiative aims to facilitate coordination of care at a local level for high needs patients. It comes in the wake of the province’s primary care reforms and the introduction of accountability agreements with hospitals.

After a selection process in late 2012, the ministry received business plans earlier this month from the first 19 of an anticipated total 77 Health Links.

Hoping to provide better care for the top 1 to 5% of users

One of the goals of the initiative is to provide better care for the 1% to 5% of citizens who, research has indicated, are high users of health care. The focus is to be on the subset who are high users with multiple chronic conditions and on senior citizens. The definition and identification of high users will vary at the local level but might include, for example, a person with severe heart failure and chronic obstructive pulmonary disease who has early dementia.

It also aims to reduce costs, particularly expensive hospital visits, based on the assumption that many of these patients’ hospital emergency ward visits, admissions and re-admissions, can be prevented with better coordinated care.

Approximately 50,000 citizens are expected to be covered by each Health Link—though the population totals vary—and each Health Link reports to its Local Health Integration Network (LHIN).

The size and number of the Health Links is based on research by the Institute for Clinical Evaluative Sciences (ICES) that identified natural referral patterns between doctors and hospitals in local areas. The Health Link is supposed to provide a governance model, and a political push, for the ICES-identified groups to work together.

All Health Links are required to have physician involvement. The OMA has indicated support for the model and recently provided its members with a summary that is reproduced in the attached box.

This information first appeared in the February 2013 issue of the Ontario Medical Review and is reproduced with the permission of the Ontario Medical Association.

A focus on coordination

Need for more coordination is evident, as the fragmentation and disconnects in the province’s health care system are obvious to many users. “Many patients are left to navigate the system alone, seeing a myriad of unconnected providers, who are unaware of patients’ past experiences, leading to duplication of diagnostics and care,” the ministry notes in a background document on the Health Links initiative.

The push towards better local coordination of care for high needs “complex” patients is being launched concurrently with health system funding reform and austerity measures.

Still, most observers applaud the intent of the networks, though they emphasize that “the devil is in the details”, and some warn that the limited development funding for the local groups—capped at $75,000 each—may prove inadequate to the challenge. (Once a plan is in place, each Health Link may receive up to the $1-million in one-time funding.)

The Health Links initiative, which is based on voluntary participation, is modelled in part on accountable care organizations in the United States, and similar groupings in the United Kingdom and Australia and New Zealand.

While each Health Link has to provide baseline data and develop measures that will allow for evaluation of the initiatives, the emphasis is on better information sharing and on innovations that allow providers to respond to local needs.

Privacy concerns about health professionals sharing patient information should not present a barrier as these issues have been clarified by the information and privacy commissioner of Ontario, Angus notes.

Further, a team within the health ministry is committed to responding in a timely fashion when individual Health Links identify real or perceived barriers to better coordination of care, she says. Barriers might include, for example, policies that appear to unreasonably limit home care for post-acute care or palliative patients. The ministry’s response will indicate how the barrier might be removed and while eliminating some barriers could be relatively straightforward, removing others could involve regulatory or legislative change,  Angus noted.

Guelph and Temiskaming among the early adopters

One of the 19 “early adopters” is a Health Link led by the Guelph Family Health Team (FHT) which, with 75 doctors as well as nurses and other health professionals, provides health care to about 100,000 of the city’s 120,000 citizens. The group’s steering committee includes the police chief, and representatives from the local hospital, the children’s aid society and the local community health centre.

Patients who incur high costs and could benefit from more coordinated care are being identified by reviewing their primary care medical charts, says Ross KirkConnell, executive director of the FHT.

He cites the example of a patient with several mental health issues and a limited income who can’t afford to get to the family doctor when symptoms become overwhelming, and so opts to take an ambulance to the hospital emergency ward.

A different way of providing care for such a patient could better suit the person and also reduce ambulance and hospital costs, he notes. “The challenge—and this is a system challenge— is not to be health care centred but to also look at poverty, transportation and disability issues,” he adds.

In the beginning, Angus does not anticipate that funding will be re-assigned among  providers and agencies, but rather that they will be more aligned, and work together.  “If a big improvement is demonstrated,” she said, there may in the future be an opportunity to redistribute money upstream to, for example, better housing for a high needs patient.

The Guelph Health Link aims to assign one person in primary care, likely a doctor or a nurse, to be the “go-to person” who can keep in touch and intervene as necessary on behalf of each patient who is deemed high needs and would benefit from more coordinated care. “’If there was just someone I could call’ is a statement that we hear from patients a lot,” says KirkConnell.

The approximately 33,000 people in the Temiskaming Health Link, another one of the 19 who submitted a business plan, are spread out geographically and represent diverse populations (about 24% of the population is French speaking and 8% are First Nations.)

The Health Link is led by Le Centre de santé communautaire du Témiskaming and membership includes three hospitals, four other community health centres as well as the Northeast regional Community Care Access Centre, the public health unit and representatives from the Canadian Mental Health Association and seven local nursing homes, says Jocelyne Maxwell, executive director of the CHC.

Maxwell explains that a group called the Temiskaming Collaborative Health Providers predated the call for the formation of health links. The group’s aim was to better coordinate care and, although all were health providers, “we spent a good year just trying to understand what each other did,” she said.

The group had launched plans for joint human resource plans, and welcomed the Health Link initiative, because it provided an initial target patient population to focus on. “The exciting thing about Health Links is that it forces us to step back and really think about how to provide health care differently, as partners in a system with joint responsibility.”

Importantly, patients are included in this process, she says. “After all, they are the ones who can best identify the challenges they face.”

Scaling up across the province will be a challenge

Rick Glazier, who co-authored the ICES research (not yet published) that laid the groundwork for the configuration of the Health Links, said the main challenge facing the voluntary organizations will be to prevent unnecessary, costly hospital admissions. “Let’s face it, preventing one visit to a primary care practitioner is not going to save much money.”

Getting providers together to improve the quality of care is a great ideas, says Adalsteinn Brown, Director of the University of Toronto’s Institute for Health Policy, Management and Evaluation. The challenge will be “what to do next, how to get from one side of the province to the other—how to scale up— and how to get the evidence base” to support an authoritative evaluation.

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The Question: I am a man who suffers from severe depression. I seem to be medication resistant, as I have tried many. They work for a while and then they stop working. I have been having a bad month. Started near the beginning of December. Currently I am taking Citalopram and Ritalin for ADHD. I am at my wits end. I am dead inside and just waiting for the outside to catch up. I don’t take care of myself at all. The psychiatrist I was with just kept trying different medications, so I quit seeing him and now my doctor handles prescriptions. I have trouble communicating what is going on inside me as I don’t want to upset anyone and have them freak out. That is why I am using e-mail. Any help, advice would be greatly appreciated. I am even willing to be locked up, to force myself to work on me. 

The Answer: Your question demonstrates the pain and suffering that occurs when an individual has a mental health issue not adequately addressed. The moment I read your e-mail, I contacted Sunnybrook’s Psychiatrist-in-Chief, Ari Zaretsky, who specializes in mood disorders and cognitive therapy. He suggests that you return to your family doctor. Explain the symptoms impairing your function have not responded to your psychiatrist’s interventions.

“He needs a fresh look so I would suggest he get an evaluation from another psychiatrist to evaluate his diagnosis and treatment regimen,” Dr. Zaretsky said in an interview. “Even if the diagnosis is, in fact, correct and in keeping with the first psychiatrist’s assessment, most patients need a combination of medication and psychotherapy or psychosocial interventions.”

It’s not uncommon for patients to have more than one diagnosis. You describe yourself as having severe depression and Attention Deficit Hyperactivity Disorder, [ADHD] the latter of which is characterized by inattentiveness, over-activity, impulsivity, or a combination of those three symptoms.

Every adult who has this disorder has had it as a child, though many children may not have been diagnosed. Only about one-third of diagnosed children will grow out of the problem by adulthood, typically after the central nervous system has matured and brain has become fully wired, around age 20, according to Dr. Zaretsky.

That, in part, is why Dr. Zaretsky screens every new patient referred to him for ADHD, which affects five per cent of the population, typically more males than females.

“ADHD is common and often missed. People tend to focus on the mood disorder,” he said. “…You should target the ADHD with psycho-stimulants and cognitive behavior therapy that teaches the patient to become more organized and to be able to manage themselves more effectively.”

Chronic inattention, distractibility, forgetting appointments, severe procrastination and impulsivity are common symptoms of ADHD. In some cases, those with ADHD have difficulty holding down jobs due to their intolerance of boredom the need to do tasks that require attention to detail.

Typically, in cases where patients have the two diagnoses of depression and ADHD, the depression is treated first in order to provide the motivation and energy required to tackle the chronic ADHD problems.

Dr. Zaretsky said a day treatment program would be critically important to your treatment. In such a group, there are structured activities that can help you learn life skills. He also recommends you exercise, if you aren’t already doing that.

“Even though it is very difficult to be motivated to exercise when you are depressed,” says Dr. Zaretsky, “aerobic exercise is very beneficial to the brain and leads to the growth of new neurons.” If you are self-medicating with drugs or alcohol, to soothe your distress, refrain from both, as it will compound your issues in a “very significant way,” he said.

To sum up, please visit your family doctor, request another referral to a psychiatrist for a fresh look at your diagnoses, and request that you be enrolled in a day treatment program in your area. Thank you for your bravery in writing this letter and describing your symptoms so articulately.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Connie is a Personal Support Worker (PSW) who cares for seniors and people with dementia in their homes. She is a graduate of George Brown College’s PSW program and has been working in home care for the last 10 years.

She makes $16 per hour, but rarely gets paid for more than four hours a day, because most of her time is spent traveling on subways and buses between clients’ homes, which are spread across the sprawl of North Toronto. She is paid only $1.50 for travel, even though getting between clients’ homes often takes an hour on the TTC. She does not make enough money as a PSW to make ends meet for her family, and so cleans homes when she is not providing home care.

Despite struggling to make ends meet, Connie loves providing home care, and speaks passionately about how she helps her clients live independently. She can’t help but wonder, however, why she has to struggle when her former classmates from George Brown with the same training enjoy higher wages and steady hours working in hospitals and nursing homes.

Moving care out of hospitals

Ontario has joined an international trend in shifting health care out of hospitals and into communities, including a planned expansion of home care. Not all patients who occupy hospital beds need acute care and not all patients in long-term care facilities need to be institutionalized. For some of these patients, care can be provided effectively and efficiently in the home.

Moving care into the home is popular with the public. Studies consistently indicate that patients prefer to be cared for at home when it is safe to do so. There is also evidence that unnecessary hospital stays are bad for patients’ health. Providing care in the home also raises hopes of substantial cost savings for the government, while simultaneously freeing up hospital resources to focus on patients with acute needs.

If done well, moving care out of hospitals could improve patient care, while reducing health care spending. However, there are hidden costs, both financial and human, of moving care into the home that have received little public attention, including lower wages, riskier work environments and greater burdens on family caregivers.

Lower wages in the home care sector

A major source of expected savings from a shift to home care is lower wages – wages in the home care sector are substantially lower than in the hospital or long-term care sector.

Personal support workers in the home care sector can be paid as little as $12.50/hour compared to hourly rates of $18 to $23 for their hospital-based colleagues. Similar disparities have also been observed for other care workers, including registered nurses.

In addition, home care workers often do not get steady hours, compared with their colleagues in hospitals and long-term care.

The primary driver of lower wages in the community is that there is significantly less unionization compared to the hospital sector. According to Stella Yeadon, a representative for the Canadian Union of Public Employees, this is largely because union organizing is very challenging in the home care sector. Unlike the hospital environment where workers are in a single building, home care workers rarely meet one another. As a result, traditional labour organizing methods have tended to fail in this sector.

According to a report from the Ontario Health Coalition, another historical contributor to lower wages was the Ontario government’s procurement policy for Community Care Access Centres (CCAC), which required CCACs to contract out home care services. While competitive bidding for contracts was somewhat successful in keeping costs down for CCACs, it  did so largely by “driving down wages,” according to the authors of the report. This procurement policy has been frozen for the last several years, but served to set a historically low baseline for wages in the community care sector.

Healthy Debate contacted a large Ontario provider of home care services regarding the wage disparity between home and hospital care, but the company was unable to provide comment by press time.

Ross Sutherland, co-chair of the Ontario Health Coalition and a registered nurse who has worked in both acute care and home care, worries that turnover as workers leave home care for higher paying jobs at hospitals is bad for patients. “In the community, you need a trusting relationship between a caregiver and a patient,” he says, “but trusting relationships need stability, and one of the things we’ve seen is that when wages are low you get a much less stable workforce. This means patients at home don’t always get the continuity they need.”

Low wages and limited benefits across an entire sector raise concerns about the possibility of recruiting skilled care workers. “People with the higher education will go where they can get the higher pay,” says Sutherland, “this makes a lot of sense to me… I’ve done this myself, actually.” These concerns are offset somewhat by work hours in home care, which tend to be flexible and therefore attractive to some workers. However, since travel time can be extensive and is often uncompensated, low wages could pose real barriers to recruiting and retaining staff.

Worker safety unknown

Another area of concern is worker safety in the home care sector.

Health care workers face substantial health risks as part of their work, due to their exposure to infectious diseases, violence from patients/residents with dementia, allergic reactions from chemical agents, and injuries resulting from lifting patients.

“The home care sector is relatively new, it’s grown quickly, and it’s relatively invisible,” says Cam Mustard, president of the Institute for Work and Health. As a result, there is not currently good Ontario data to determine how safe home care is for health care workers, as compared to delivering care in hospitals or long-term care facilities. “This is a dimension of the expansion of homecare that we’re late in realizing the importance of,” he says.

There is currently limited data on the occupational health risks of delivering care in the home. However, some care may be riskier in the home, where workers are more likely to be without either backup from other staff or mechanical assistance (such as patient lifts), as compared to workers in a hospital or a long-term care facility.

As home care expands, better data on worker safety in the home will be needed to keep the workforce healthy and safe.

Greater burden on families

Another source of cost savings for the government of moving care into the home comes from having to provide less nursing care, and not having to provide housekeeping, laundry or kitchen services in the home. Where hospitals employ large staffs to provide these services, in the home care sector many of these services are provided by patients’ families.

Kim Peterson, vice president of clinical services for the Champlain CCAC, is concerned that there is already too little support for caregivers. Any expansion of home care, she says, “must be accompanied by a major expansion of caregiver supports, including financial support.”

Despite its importance, support for family caregivers was notably absent from both Ontario’s Action Plan for Healthcare and the year-one update released last month. Support for caregivers is part of Ontario’s new Seniors Strategy, but it remains to be seen how much of this strategy will translate into action.

It is also important to recognize that many patients who need home care do not have families to care for them. Charmaine, another home care PSW interviewed by Healthy Debate, says “for most of my clients, I’m all they have. I’m their best friend. But right now the CCAC only pays for me to be with them one, maybe two hours a day. It’s not enough – they’re alone – there’s no one to care for them but me and they need more help.”

Expanding home care while maintaining quality

While many patients prefer to be cared for at home, they also want the quality to be just as good as it is in other settings. At the moment, it is not clear that this is the case, and lower wages and riskier environments raise the possibility that the quality of care may be negatively affected as services are moved from hospital to community settings.

And while patients prefer to be cared for at home, this may not be sustainable for their families without more supports for caregivers.

While moving more care into the home may be the right direction for Ontario, the hidden costs of this transition will need to be addressed. Maintaining both a skilled workforce and healthy unpaid caregivers may require additional spending, which might reduce the the anticipated cost savings of moving care into the home. The alternative, however, could be a home care system that fails to deliver the quality patients expect.

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The Question: I am pregnant and my expected due date is in June. I currently live outside Canada, and would want to go back to Toronto for delivery. I am a cash patient as my current health insurance is from outside of Canada. I tried to book an appointment with one of the OB/GYN docs for April (when I’m expected to go back), but I was asked for a referral from a family doctor. As I reside and work outside of Canada, I’m not sure how to provide the same. Would a referral from an international doctor suffice? If not, what are my alternatives to get a successful booking at the hospital with an OB/GYN? I do have a couple of preferences for doctors at Sunnybrook. Looking forward for your response and advice.

The Answer: This type of question – a pregnant woman living out of country – wondering if she can give birth in Canada is one I receive a few times a year. Without meeting specific criteria, it is unlikely most hospitals could accommodate you.

Generally speaking, obstetricians are not supposed to accept patients from out of country unless they are Canadian citizens living abroad, who wish to come home to have their baby delivered. Women who are non-citizens, are fully insured, who may be residing in Canada for their work and have family in this country are also accepted by obstetricians to give birth here, according to Arthur Zaltz, Chief, Department of Obstetrics and Gynaecology at Sunnybrook Hospital.

“We are not trying to encourage medical tourism,” said Dr. Zaltz. “That said, Sunnybrook would never refuse care in an emergency situation.”

According to Sally Bean, ethicist and policy advisor at Sunnybrook, an “out of country obstetrical patient who is not physically present in Canada poses numerous liability and insurance coverage issues.”

As a result, it is difficult for physicians to accept them as patients.

Doctors who agree to accept out-of-country patients would be viewed as having directly or indirectly solicited the patient and may not necessarily be provided coverage if they were sued outside of Canada, she said.

The federal government has been watching this issue closely and is considering changes to citizenship rules in a bid to stamp out so-called birth tourism – cases where a foreign national comes to Canada to deliver their baby, knowing the child will get full citizenship.

Currently, under the Citizenship Act, children born in Canada to parents who are temporarily in the country – visitors, students, temporary workers, asylum claimants – are automatically conferred citizenship, allowing them to access the range of taxpayer-funded benefits that come with it.

Canada and the United States are among the few countries worldwide that confer automatic citizenship by birth on soil; most other countries limit citizenship to those with a parent with permanent status, according to Remi Lariviere, spokesman for Citizenship and Immigration Canada.

“We have been considering bringing forward comprehensive amendments to the Citizenship Act,” Jason Kenney, Minister of Citizenship, Immigration and Multiculturalism, said in a CBC television interview in 2012. “…We don’t have a precise timeline. But we are looking at modernizing the Citizenship Act and this might be considered as one of those amendments.”

Unfortunately, based on the information you have provided in your question, you do not seem to fit our criteria of having strong ties to Canada and health insurance. For those reasons, we would not be able to accept you as a patient.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Call up the website home page for any large Canadian hospital and you’ll likely spot the familiar icons that link to the institution’s facebook, Twitter and YouTube accounts.

Hospitals are inherently conservative institutions and, as such, have been relative latecomers to adopt social media, which are broadly defined as digital channels that can facilitate timely, collaborative and interactive communication.

As they enter the social media fray, hospitals face a host of challenges and decisions. These range from basic upkeep—nothing is more frustrating to a potential user than a neglected or stale-dated facebook or Twitter account—to deciding how interactive to be with patients, and what staff should be trained and involved in social media use.

From marketing to improved care

Not all hospitals haven entered the fray—for example, smaller hospitals may not be able to afford the expertise and time involved in establishing a social media presence—and among those that have, how they use social media varies significantly.

Many still use the channels for marketing and old-style public relations communication—for example posting news releases—while some larger hospitals are more active, have thousands of followers, and can track and address patient concerns.

But the potential of using social media to improve patient care and patient experience is only beginning to be realized, according to health care digital communication leaders. 

That’s not surprising because it’s only been a few years since hospitals began to take social media seriously; the Ontario Hospital Association hosted its fourth Social Media in Health Care conference just last month; the first was Jan 21, 2010.

Social media policies can allay concerns about risk

The issue of privacy and risk dominated discussions about social media several years ago, but that concern has begun to be addressed as hospitals formulate and adopt social media policies (see CHEO policy, for example) that spell out ground rules for use.

An emerging debate contrasts the approach of hospitals that use a single channel “firehose” social media approach—institutions that have just one facebook and one Twitter account for all communication—and those that have multiple social media channels.

To Ed Bennett, who manages web operations at the University of Maryland Medical System, the progression from hosting single to multiple speciality channels—from addressing patient concerns at a broad level, to also addressing narrower concerns of specific patient groups—is a natural evolution.

Social media: this is where the public is talking about you

Part of his job is to monitor all online mentions of his medical centre and decide which ones are appropriate to respond to, and who should respond. “This is where conversations are moving, where they’re [the public] is talking about you, and if you don’t participate, you are cut off from the discussion.”

A lot of concerns are about services such as parking, or long waits in the ER, or how to get test results, he notes. “If you are able to resolve these, or just respond in a polite way, you can turn a negative into a positive.”

Craig Thompson, director of digital communications at Women’s College Hospital in Toronto, says  the  ”low hanging fruit”  that  social media can address involves better communication about issues that frequently frustrate patients, such as hospital access and how to prepare for procedures.  Beyond that, opportunities to use social media to improve patient experience “present themselves at different times, every organization has to find its own solutions.”

Social media such as facebook also present the opportunity to create “extensions of real life face-to-face patient support groups,” says Bennett. The Maryland University Medical System sponsors four or five of such groups, including for transplant and for trauma patients; participants have to be invited to join (the groups are closed) and the groups are moderated by a health care professional.

“Still, we explain that nothing on the Internet is 100% closed and warn people not to put out any information that wouldn’t be comfortable with the world seeing,” he says.

The multiple channel approach

Michelle Hamilton-Page is the manager of social media at CAMH (the Centre for Addiction and Mental Health in Toronto), which has a multiple channel model approach to social media (see, for example, its foundation-associated endstigma facebook page).

Hamilton-Page’s position is based in education, rather than communications, and she spends much of her time helping groups within CAMH think through whether social media can help them meet their objectives and, if so, how to go about it.

A similar approach is taken at St. Michael’s Hospital in Toronto, notes digital media manager Anthony Lucic. “People think of social media as mass communication, but it can be really focused and targeted. Sometimes, it’s about just wanting to talk with a core group of peers. Our approach is very grassroots, we sit down with people to find out who they want to engage, and what networks they could use.”

Children’s Hospitals have been early adopters of social media

Children’s Hospitals, like CHEO in Ottawa and the SickKids (the Hospital for Sick Children) in Toronto, are among the most advanced in terms of using social media. That’s partly because the patients, and their parents, are younger—and members of age cohorts that are relatively more comfortable using social media.

“Our patients, and their parents, have different expectations” compared to adult hospitals, says Ann Fuller, public relations director at CHEO. “New generations are used to sharing more and have different expectations of privacy than my mother did.”

And Fuller notes some doctors are saying it is time to relook at the idea that that physicians should not interact through social media with patients, point to “niche applications” where, for example, a clinician could be on facebook with a group of young patients with diabetes.

A recent research study at CHEO into patients’ use of facebook underscored its importance to teenagers with long-term and chronic illnesses and noted that only a few disclosed any personal health information on their facebook pages.

It concluded that that the need for social-network-based communication between patients and healthcare providers—now forbidden by some institutions—will increase and that “age-appropriate privacy-awareness education” should be strengthened.

Calls for more education, literacy

Better education about social media is something that Sivan Keren Young, manager of digital communications at Sunnybrook Health Sciences Centre, thinks is essential. “Everyone is using social media, but no one gets any social media literacy training, there’s nothing in schools, and that can cause mistakes, people can unintentionally do the wrong thing.”

Interestingly, it was disappointment about the level of public uptake for H1N1 vaccination was the inspiration for the first major Canadian examination of how health care institutions could use social media to understand and improve the patient experience.

“For us, the light bulb went on” when the Toronto-based Health Strategy Innovation Cell went online to find out what was being said in patient websites and chat rooms about the H1N1 vaccine, says Cathy Fooks, president of The Change Foundation , which co-authored a report on using social media to improve health care and worked with two health care organizations to explore the potential of social media.

What the investigators discovered was a whole series of anti-vaccination conversations about concerns about the vaccine—concerns that were inhibiting people from getting vaccination. “Public Health had no idea—none of that concern had turned up in their formal communication channels,” Fooks noted.

The foundation went on to co-author with the Innovation Cell a seminal report on using social media to improve health care and a report based on work with two health care organizations exploring the potential of using social media.

According to Bennett, those who are still sceptical about social media should stop thinking of it as brand new and different: “It’s still people talking to each other.”

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The Question: After hip replacement surgery, I was placed on tramadol for pain. It worked moderately well, although in retrospect, I would have probably done better with something stronger. The worst part is that I wasn’t told how to wean myself off of it, only to switch to over-the-counter pain medicine when I felt I didn’t need the prescription pills anymore. As a result of I suffered withdrawal symptoms. As a patient, I had to figure this all out for myself. Whose job is it to tell me this information?

The Answer: In this post, patient Emily Nicholas, who is a Patients’ Association of Canada board member, is one of the experts providing advice on how to navigate the health care system for pain management. As a patient, she knows this story because she lived it: she had a hip replacement in July 2010 at age 28 and was prescribed tramadol – similar to a narcotic – by an orthopaedic resident. It didn’t work very well and by hour three, the next pill couldn’t come soon enough. She was also placed on morphine for breakthrough pain, which made her so nauseous she had to take gravol to help alleviate it. Ms. Nicholas was told to switch to ibuprofen when she felt ready but no one told her what ready felt like, leaving her to figure this out on her own.

“They can only give you a rough estimate of the length of time you will need the medication,” she said in an interview. “The amount of pain and suffering that came after was more intense and persisted for longer than I had expected.”

She points to information sheets from the pharmacy she was provided. For six, typed pages, in words that few would describe as patient-friendly, the drug’s uses and precautions were explained.

“The patient often has a lot of insight into their condition, but is kept out of the loop,” said Ms. Nicholas, who has an interest in patient engagement and health policy design. “Just putting information out there, doesn’t mean you are communicating it.”

While the information sheets do note that tramadol can cause withdrawal reactions, especially when used regularly for a long time or in high doses, they suggest patients see a doctor to reduce the dose gradually. Now that Ms. Nicholas was no longer seeing the orthopaedic resident, what doctor was going to help her get off of the medication, a month after taking it?

Ms. Nicholas went cold turkey in late August 2010, dropping the tramadol. Within days, she felt like she had the flu and had an odd sensation of a shock-like pain in the back of her neck. She didn’t make the connection straight away that she might be experiencing withdrawal symptoms.

“I thought I was getting the flu,” said Ms. Nicholas, now 30. “I was anxious and shaky, with the feeling of shocks up my head.”

Realizing she might be experiencing withdrawal, she went back on the pills, reducing their dose, until she was able to get off of them for good.

Ms. Nicholas wishes she had been given a plan for pain relief and weaning from the pain drugs. She also wished she was provided alternatives, including the shot bean bags, body pillows and deep breathing exercises she later discovered on her own.

Anesthesiologist Chris Idestrup, director of the Acute Pain Service at Sunnybrook, said patients are typically provided a bundled approach to pain management in a hospital setting consisting of a combination of acetaminophen, anti-inflammatory medication, plus nerve blocks and possibly opioids. When patients are ready to leave hospital, they typically go to one drug – be it tramadol, or another drug that is a combination of oxycodone and acetaminophen or acetaminophen. He described the medication Ms. Nicholas was on as “middle of the road,” in regard to its strength, and one that is prescribed if patients “are not able to tolerate a stronger opioid.”

He indicated that post-surgical patients are typically started on stronger medicine, such as morphine, which would be reduced to a weaker opioid if it were too strong. He recommends patients ask their doctor if there are other medications they can take in addition: by throwing an anti-inflammatory into the mix, that would help reduce the need for other pain medication and decrease the side effects of one drug.

“Realistically, after surgery, patients might need to use opioids to control pain for two or three weeks, some require it for longer,” Dr. Idestrup said in an interview.

Oftentimes, he says, patients can wean themselves off the drug by tapering it by about 20 per cent per day. Sometimes it is as simple as dropping one tablet each day so that by day 12, the patient is not taking any medication.

“Instead of taking two in the morning, take one in the morning,” he said. “Drop a pill each day and see how you deal with that.”

He recommends patients see their family physician, a week or two after being home, with their pain medication in hand. If still on the maximum dose, discuss whether they should be set up with a “weaning protocol” to get off of the medication.

“I wish I had known that it was okay to try to get your physician on the phone,” she adds, “And to ask for what you need and tell them what you want.”

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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This change was made following reporting by the Toronto Star, which raised important concerns that the public was being put at risk by a policy of not identifying clinics that receive failing grades or conditional passes.

To date, the inspection program has identified some clinics with serious quality deficiencies, including a colonoscopy clinic in Ottawa with inadequate sterilization procedures. Since the beginning of the inspection program in 2010, nine of Ontario’s 251 clinics failed inspection, and a further 64 passed with conditions.

The CPSO will now post inspection results on their website.

There is wide agreement that this policy change represents a positive step in improving the transparency of the CPSO, and its Registrar, Rocco Gerace, agrees that Ontario’s self-regulatory bodies must continue to become more transparent. However, there have also been recent calls for the CPSO and other regulatory bodies to go much farther, and begin publicly reporting ‘cautions.’ Cautions are remedial, in that they are intended to correct a problem in a professional’s practice. Cautions are not legal findings of professional misconduct.

Would publicly reporting cautions help protect patients from medical errors, or could this practice have unintended consequences that might undermine patient safety?

Ontario’s self-regulated health professions

Doctors in Canada are a self-regulated profession, meaning that the profession itself is responsible for ensuring that doctors meet professional standards of competence and conduct, in order to protect the public from incompetent or unethical practitioners.

Self-regulation is used in many parts of the world to govern professions that possess unique combinations of knowledge and skills, which make effective external regulation difficult.

In Ontario, there are 21 self-regulated health professions, including nurses, pharmacists, and dentists.  Each of these professions has their own regulatory college, which are responsible for establishing and enforcing professional standards for their members, ensuring their members meet training and educational standards of the profession, and investigating complaints against members.

The central mandate of all of Ontario’s regulatory colleges is to serve and protect the public. All of these regulatory colleges operate under Ontario’s Regulated Health Professions Act.

All self-regulated health professions in Ontario are required to have a complaints and discipline process in place to investigate complaints from both the public and other members of the profession. Some of the colleges also have active quality assurance processes, such as inspections for pharmacies and Out-of-Hospital Premises.

Complaints and Discipline at the CPSO

When complaints are made against doctors (either by patients or by other health professionals), they are investigated by CPSO staff. The findings from these investigations are then presented to the CPSO’s Inquiries, Complaints and Reports Committee, which is made up of doctors and government appointed public members. This committee’s hearings are not public.

If the committee finds that a doctor’s conduct or care provided was appropriate, it will take no further action.  However, if it finds that the complaint has merit, it has several options.

One option is to issue a caution, if the committee believes a doctor would benefit from some advice or direction about future conduct. The caution can be in writing or the committee may require the doctor to appear in person to be cautioned, in order to discuss steps the doctor must take to avoid future problems. Doctors who are cautioned in person are usually expected to prepare for the meeting by making practice changes or reviewing relevant medical literature.

The committee may also choose to direct the doctor to participate in training or educational programs to improve his or her practice. If the doctor is believed to be suffering from a health condition that impacts his or her ability to practice medicine, the committee will refer the doctor to a special panel for assessment.

Particularly serious complaints are referred by the Inquiries, Complaints and Reports Committee to the CPSO’s Disciplinary Committee. This committee is made up of both doctors and public members. Unlike the proceedings of the Inquiries, Complaints and Reports Committee, the Disciplinary Committee’s decisions are public and posted on the CPSO’s website.

Disciplinary Committee hearings are adversarial, with each side represented by lawyers. If the committee finds that a doctor has committed an act of professional misconduct or is incompetent, it can revoke or suspend the doctor’s license to practice medicine, or impose terms, conditions or limitations on the doctor’s practice. In cases of professional misconduct the committee may also issue reprimands and fines up to $35,000. In cases of sexual misconduct, it may further require a doctor to cover the costs of counseling and therapy for the patient.

Protecting the public from medical errors

“Every doctor makes mistakes,” says Brian Goldman, an emergency room doctor and host of CBC Radio’s White Coat, Black Art who has called for greater openness around medical errors. “We don’t discover or disclose the vast majority of mistakes that happen around us every day,” he continues, “but anyone who says they don’t make mistakes is living in dreamland.”

The obvious and serious concern for patients is that when doctors make mistakes, it is patients who suffer. Patients want to be able to know if their doctor is deficient in some way, so that they can make an informed decision about whether to see the doctor or seek medical care elsewhere.

In the case of very serious clinical errors and abuse of patients this is possible; because the CPSO’s disciplinary process is public. However, in the case of less serious errors, there is currently no way for a patient to know if their doctor has been cautioned in the past. Nor is there currently any routine follow-up by the CPSO after a caution is issued to verify whether a doctor has made changes to his or her practice.

For very minor errors that posed no danger to a patient, this may be of no consequence, but “if there is an egregious action by a doctor that didn’t reach the threshold for the Discipline Committee,” asks Gerace, “should there be an ability of the public to know that? Maybe there should.”

The role of cautions

While decisions by a regulatory college’s Disciplinary Committee can result in sanctions, such as the revoking of a doctor’s license to practice, cautions are designed to be educational, rather than punitive. They are not used in cases of intentional wrongdoing, but only when the CPSO believes an unintentional mistake has been made. “They’re designed to tell doctors how they should handle issues of a similar nature in the future,” says Gerace.

The advantage of cautions is that an educational approach allows complaints to be addressed relatively rapidly (most complaints take between three and ten months, versus disciplinary actions which can drag on for much longer); with an emphasis on ensuring that the error is not repeated in the future.

“Obviously there’s a question about when that education should be public knowledge… but it’s disappointing that what we’re hearing [from the media] is just ‘make cautions public,’” says Gerace. “This doesn’t even begin to speak to the complexity that should go into making a decision like this.”

The government agrees. Zita Astravas, a spokesperson for Ontario’s Minister of Health Deb Matthews, says “the minister has asked the colleges to continue to review their policies to find places where transparency can be increased, but she has not requested the colleges make cautions public.”

“Cautions are a valuable educational tool for the colleges,” she says, and the minister recognizes that “any changes should be very carefully considered.”

“Unintended Consequences” of reporting cautions

Goldman believes that public reporting of cautions is not an effective way to improve patient safety. “There is a certain segment of the public who has a thirst to name, blame and shame,” he says, “and they think that this somehow demonstrates to us that the system is safer. But it doesn’t work that way.”

Goldman believes that “naming and shaming is not a recipe for improving the system.” Instead, he argues “we need to get doctors to talk more openly about their mistakes in real time… that’s how you reduce errors.”

Goldman’s concern is that publicly reporting cautions will have “unintended consequences.” Chief among these is transforming an educational experience into a legal process. “If the consequence of a caution is going to become a loss of professional reputation, then doctors are going to fight it. They’ll lawyer-up and the process will grind to a crawl.”

But more important for Goldman is that “if the consequence of talking about medical errors is naming and shaming, then no one is going to talk about medical errors. We won’t get any better.” In his view, doctors must promote a culture of openness, not reinforce a culture of silence.

There is some evidence to back up Goldman’s concerns. In 2011 the state of Utah introduced financial penalties for medical errors and preventable hospital acquired infections. In the year that followed only 17 medical errors were reported in the entire state (down from 81 the year prior). Since it is estimated that between 40,000 and 98,000 medical errors occur every year in the United States, many in the medical community believe Utah’s health care professionals have simply stopped reporting errors. There is also research that suggests similar punitive policies in other states for preventable infections had no effect on the actual rate of preventable infections.

If Goldman is right, the public reporting of cautions may have little effect on actual error rates, and could result in the exact opposite of what it is meant to achieve: less transparency, not more.

Following up on serious and serial cautions

One option to preserve the confidentiality of cautions, while enhancing patient confidence in the system, would be for the CPSO to introduce a follow-up system for doctors who receive serious or multiple cautions.

The CPSO does not currently do routine follow-up on cautions to ensure changes have been made to a cautioned doctor’s practice. The college does occasionally follow-up in the case of written cautions, but this is not common practice according to Kathryn Clark, Senior Communications Coordinator for the CPSO.

From the patient standpoint, the lack of routine follow-up for serious cautions raises concerns that doctors may repeat past mistakes. While following up on every caution issued could be prohibitively expensive and likely unnecessary (not all cautions involve risk to patients), following up on cautions that involve significant risk to patients may be a way of avoiding the chilling effect Goldman describes, while assuring the public that cautioned doctors have taken adequate steps to correct any deficiencies in their practice.

Striking a balance between transparency and quality improvement

To date, much of the evidence on reducing errors points towards the effectiveness of system improvements combined with education, rather than punishment of health professionals.

There are clearly areas where the CPSO and other regulatory colleges can and should make rapid improvements in transparency, with the CPSO’s recent bylaw change regarding inspection results of Out-of-Hospital Premises as a perfect example. The challenge for the regulatory colleges as they consider whether to make some cautions issued to individual practitioners public will be to strike a balance between the rights of individual patients to make informed decisions in selecting their health care providers, with the public’s interest in having a healthcare system which progressively reduces the risk of errors as much as possible.

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The Question: My mother is searching for long-term care home for my father and because of the expense involved, she will probably end up selling her house and looking for a new place for herself to rent. I can’t imagine that this is the best way to go – it just seems like we are extending my father’s hospital stay somewhere else at our expense and now my mother is going to be out of her home. At least at the hospital, my parents are not draining their resources paying for my father’s care.

The Answer: It can be daunting to search for a long-term care facility at the last minute when returning home is no longer possible for your father. You also face the sad reality that your parents, after being together for years, may not be able to live together any longer.

Though it seems like a nursing home is costly compared to the hospital, the monthly payment is only for the “living portion” – room and board – of the facility as the medical care is still funded by the provincial health plan. The fees for these homes – there are about 630 in Ontario – include among other things, meals, bed linens, having medication administered, and assistance with the essential activities of daily living. There are additional costs with cable television and hairdressing.

According to Donna Rubin, chief executive officer of the Ontario Association of Non-Profit Homes and Services for Seniors, a spouse will not be forced out of their home to afford long term care.

“There is certainly no need to sell a house,” Ms. Rubin said in a telephone interview. “If you can’t afford it, the government steps in and provides the long term care home with a subsidy on your behalf, so there really is no need to sell the family home. In fact, if the spouse is still living in at home, a ‘special circumstances’ application may be made to reduce the resident accommodation charges even further.”

The fees for nursing homes are regulated, costing in Ontario per month $1,674.14 for a basic room: $1,947.89 for a semi-private room and $2,274.86 for a private room. The short-stay or temporary stay at a home costs $1,083.75 per month, according to 2012 figures from the health ministry, the latest available.

Retirement homes – where about 40,000 Ontario seniors reside – can also be an option, though their residents generally tend to be healthier. The cost of these homes ranges from $1,200 a month to $6,000 a month.

In some cases, it can be worth exploring the cost of hiring help inside the home, such as a personal support worker – especially if it will keep the couple together for longer, according to Betty Matheson, patient care manager at Sunnybrook Health Sciences Centre, who manages specialized geriatric services.

“The costs do vary for care at home, depending on the services you require,” said Ms. Matheson. “The family should weigh the affordability of care in the home, compared to the costs of a nursing home. That way, your parents can spend their days happily in their own setting.”

That hired help would almost always be in addition to any funded help you may receive, such as that through the community care access center.

“I would really explore all those options and see what’s the best for you and your family,” said Ms. Matheson.

However, she pointed out that not all people are candidates for staying at home with hired help.

“If dad is in such a state that behaviorally he is not safe at home – he wanders or becomes aggressive,” she says “Sometimes there is no option except a nursing home for the safety of everybody involved.”

Ms. Rubin, whose provincial association represents not-for-profit long term care homes, seniors’ housing and community service agencies, offered several tips on what to look for. She suggested you ask about the ratio of staff to residents and how many residents are under one personal support worker – the ratio for the latter typically ranges from 1 to 10 to 1 in 13.

She recommends that you go to one of the homes you are interested in and spend time observing staff. Is it a welcoming atmosphere? Do staff members know the names of the residents? Is the facility clean and in good repair? Is the call bell within easy reach? Does the food look appetizing? What kind of volunteer support does it have for any number of activities, including feeding? She also suggested that you try to determine how committed the home is to maintaining the independence of its residents: incontinence programs and other programs to regain function – such as eating and walking – would be ones to seek out.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Chris is a family doctor at a Family Health Team in a Southern Ontario farming community (some details including his name have been changed to protect his and his patients’ identities). He sees many children and youth who have mental illnesses such as depression, anxiety and severe ADHD. While he can care for some of these patients himself, others need a level of care he cannot provide despite being in a well supported group practice. When he tries to get these children help, however, he is confronted with what he feels is “a broken system.”

Many of his patients face at least 12 month wait times to see a child psychiatrist, and if they are admitted to hospital because their illness reaches a crisis point, they are simply put back on the wait list once they are discharged. “There’s no continuity for these kids,” he says.

While they wait for specialized care, Chris does his best to manage their conditions himself, but he wishes he could get more training in child mental health, and that he could call a child psychiatrist to get their input about treatment options for his patients with complex needs.

Most frustrating for Chris is that many of his patients cannot afford to send their children to see counselors or psychologists who could help treat their conditions, because the Ontario Health Insurance Plan and their personal insurance do not cover these services. While the schools and community agencies in Chris’ area do provide some of these services, he believes they are “overwhelmed,” and that his patients are falling through the cracks. “They’re not getting the care they need” he says.

A broken system

Reports released over the last decade paint a bleak picture of child and youth mental health services at both the national and the provincial level.

In 2006, the senate released its report Out of the Shadows at Last, which identified numerous problems with child and youth mental health services across the country. It found major gaps in early intervention, turf wars between service providers and a system based on arbitrary age categories, leading to disruptions in care.

It also found severe shortages of mental health professionals, including psychiatrists, psychologists, nurses and social workers.

In 2008, Ontario’s Auditor General reviewed the province’s child and youth mental health agencies, and found that they had been suffering from 10 years of eroding funding. The Auditor reported that this erosion created strain on these agencies’ core services and resulted in a reduction of preventative and early intervention programs.

The report also found that there was insufficient wait time monitoring, little in the way of case management standards across organizations, and a lack of evidence-based programming.

“Surge” in demand

Adding to the strain on Ontario’s system, experts believe mental health services are experiencing a “surge” in demand.

While data on prevalence of mental illness in Canada is limited, the Senate report on mental health found that epidemiological studies indicate that “the overall prevalence of mental illness in Canadian children and adolescents, at any given point in time, is about 15%.  This translates into approximately 1.2 million of children and adolescents who experience mental illness and/or addiction of sufficient severity to cause significant distress and impaired functioning.”

Ian Manion, executive director for the Ontario Centre of Excellence for Child and Youth Mental Health, which develops evidence-based training and tools for mental health providers, says there are several hypotheses about what may be behind the increase of demand. He suspects it is related to success in reducing stigma around mental illness. “Right now only about one in six children who have a mental illness actually receive treatment; so if we succeed in decreasing stigma there is going to be enormous demand. I think we’re seeing that now,” he says, “and we’re not ready to meet the demand now that more people feel safe to come forward for help.”

Simon Davidson, medical director of the Mental Health Patient Services Unit at the Children’s Hospital of Eastern Ontario, agrees that demand on specialized psychiatric services has increased. “We are absolutely overwhelmed with demand,” he says. “Many more families are now coming forward – often the first time parents become aware of mental illness in their children is when their child has suicidal thoughts. When that happens they bypass the school system, guidance counselors or community mental health services – they come straight to hospital to see a psychiatrist.”

A chronic shortage of mental health professionals, coupled with this increase in demand, means that a progressively larger share of the medical management of mental illness among children and youth is falling to primary care providers in the community.

Ontario’s Open Minds, Healthy Minds strategy

In 2011, Ontario unveiled a new long-term strategy for mental health and addictions, with children and youth as the focus for the first three years. Manion describes the strategy as “ambitious,” and believes that it has put Ontario’s child and youth mental health system on the “cusp of transformation.”

This “whole of government” strategy was intended to develop an overarching vision, mission and goals to bring together the Ministry of Education, Ministry of Children and Youth Services and the Ministry of Health and Long Term Care, who all share responsibility for child and youth mental health.

At the core of this strategy was a funding commitment of $257 million over three years, targeted for child and youth mental health.

While the strategy is vague on details, it emphasizes improving timely access to mental health services, early intervention, and closing service gaps for vulnerable children and youth.

Importantly, the strategy recognizes that primary care physicians and nurse practitioners, despite providing mental health care to many children, are not currently well integrated with the rest of the child and youth system. It also acknowledges that primary care providers need additional training, tools and support to be able to provide effective mental health care in the community.

To date, the Ministry of Health and Long Term Care has designated $11million to hire Registered Nurses and/or Registered Practical Nurses with mental health and addictions expertise to assist school boards in recognizing and responding to student mental health and addictions issues. Another $6 million has been designated for service collaboratives to improve transitions and support collaboration and coordination of services for children, youth and adults. $9 million has been earmarked for expansion of eating disorders treatment programs. $2 million has been designated to develop an evaluation program, including development of outcomes and indicators, which is intended to be adapted to encompass adult mental health and addictions.

The mantra of integration

For patients, Ontario’s mental health system is badly fragmented and many find its complexity daunting. “Right now you need a graduate degree just to figure out the maze of services,” says Davidson.

Mental health services in Ontario are overseen by the three Ministries mentioned above. Services are delivered by 440 child and youth agencies, 330 community agencies, 150 substance abuse agencies, 50 problem gambling centres, 68 school boards, 36 public health units, and more than 10,000 doctors.

Administrators and providers work in silos, at both the ministry and the agency level. Despite working in the same communities, primary care providers often have limited interaction with schools or child and youth agencies.

As a result, “integration” has become a mantra among Ontario mental health experts. “What is needed is a shared vision” says Michael Boyle, who holds a Canada Research Chair in the Social Determinants of Child Health, “something to bring these very different groups together and help them get over their differences.”

“The good news,” says Davidson “is that these Ministries are finally talking. I honestly wasn’t sure if it would ever happen, but it is.”

Integrating primary care

While conversations at the highest levels have begun, on the front lines there has been limited progress on integrating primary care providers into the wider system.

Davidson believes that right now primary care providers are largely on their own. “They’re isolated not only from community mental health services, but also from hospital services,” he says.

He believes that “if hospital services connected better to family doctors, so that more family doctors could just pick up the phone and get a quick consultation with a child psychiatrist over the phone, family doctors would feel a whole lot better supported.” He thinks that more access to this kind of telephone consultation could also be used to help primary care practitioners find additional services in their communities.

Some progress has already been made on this front. Under the OHIP fee schedule, family doctors and psychiatrists can arrange telephone consultations. In addition, the Ontario College of Family Physicians has launched a Collaborative Mental Health Care Network, which brings together family doctors with psychiatrist mentors. Ontario also has a telepsychiatry program, operated out of Sick Kids, which connects children and family doctors in remote areas with specialists in Toronto. However, so far participation in these programs is relatively low (for example, only about 4% of Ontario’s family doctors are enrolled in the collaborative program), due to a mix of lack of awareness, tight budgets and limited availability of psychiatrists.

Likewise, some organizations have made real progress in bringing primary care together with community mental health services, and their experiences may be instructive for others. One example is found in the Owen Sound region, where the Owen Sound Family Health Team has joined with Keystone Child, Youth and Family Services to provide publicly funded, multidisciplinary mental health care in their region. Patients at the family health team have access to all of Keystone’s services, including respite care, recreational sessions and support groups. Shared electronic health records allow the patients to transfer seamlessly between practitioners and programs.

Supporting primary care: tools and training

While greater integration will be of help to primary care providers, family doctors and nurse practitioners also need tools and training to be able to effectively screen and manage childhood mental illness.

Here Ontario may be able to benefit from innovative work in British Columbia, which has developed a child and youth mental health training program and tool-kit specially tailored for primary care. Liza Kallstrom, the lead for Change Management and Practice Support at the British Columbia Medical Association, explains “the program is based on a burning platform of early identification – we know that most adult mental illness starts in childhood, and that it can be much less severe if it is identified and treated at an early age.”

The program was developed in collaboration with Dalhousie University’s Stan Kutcher, an internationally recognized expert in child psychiatry.

This program includes a set of screening and treatment tools to support family doctors in making early and accurate diagnosis of the three most common mental illnesses that can be treated effectively in the primary care setting: depression, anxiety and ADHD. Many of these tools can be directly incorporated in to the most common electronic health record systems.

“The treatment tools emphasize non-pharmacological treatments first, such as cognitive behavioral therapy and group therapy” says Kallstrom, “medications may be necessary, but we recommend non-drug therapy first.” (With the exception of ADHD, where medication is first line treatment.)

The program also familiarizes and connects family doctors with other mental health services in their area, including psychiatrists. In addition, upon completing the training, family doctors may access special billing codes, which allow them to book longer appointments with children and youth for screening and treatment.

By equipping primary care practitioners with the tools they need to effectively treat depression, anxiety and ADHD in the community, it is hoped that care gaps will begin to close and psychiatric specialists will be able to focus more of their time on treating more severe conditions that cannot be managed in the community.

So far over 100 family doctors in British Columbia have been trained by the program since it launched last year, and it has secured funding to train 400 more. The first phase of program’s evaluation has been completed, and results to date are very promising. Further, the adult version of the program, which has been in operation longer, also appears to perform well.

The program was designed with national scalability in mind. “It can easily be adapted for Ontario and for the rest of Canada as well,” writes Kutcher in an email. “It is an outstanding program with great promise and has the potential to transform how mental health care can be delivered for young people across our nation.”

A number of other countries have expressed interest in adapting BC’s mental health training programs to their own jurisdictions, says Garey Mazowita, the program’s executive director.

While there is often temptation in Canada’s largest province to re-invent the wheel with “made in Ontario” solutions, if the three Ministries who share responsibility for child and youth mental health are eager to make more rapid progress in building capacity in primary care, they may wish to look west for a possible ready-made solution.

Looking forward

The beginning of meaningful cooperation between Ministries in Ontario is a positive development. However, many primary care practitioners like Chris have yet to notice much change on the front lines. With the strategy nearly halfway through its three year term, it will be essential to turn strategy into the kind of action that improves mental health care for Ontario’s children and youth.

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The Question: What are the best and worst places to have diabetes in Canada, based on the cost of needles and other supplies?

The Answer: This question came via twitter from a patient, who rightly pointed out that health care in Canada isn’t always fully covered, especially when it comes to having a chronic condition such as diabetes.

Out-of-pocket costs for patients with Type 2 diabetes, the most common form of the disease, were lowest per year for those living in Nunavut and the Northwest Territories, where it is fully covered. In the Yukon, there is a $250 deductible, then full coverage.

The next lowest provinces are Quebec ($1,546.58) and Saskatchewan ($1,870.50). The highest costs were encountered in New Brunswick ($3,426.99), Newfoundland and Labrador ($3,396.04) and Prince Edward Island ($3036.31). Ontario ($2,073.50) was considered a middle performer. That compares to the Canadian average ($1,824.97), according to June 2011 data provided by the Canadian Diabetes Association. Those figures are based on payments made by those with an annual individual income of $30,000. In many cases, the out-of-pocket increases for those with the higher incomes of $43,000 and $75,000, save for the Yukon, New Brunswick and Newfoundland and Labrador, where the amounts are the same, no matter the income.

The amounts are based on case studies and include the cost for medications, devices, test strips for glucometers and other supplies – items that are not typically covered on public health plans.

Though the Canadian Diabetes Association’s method on tracking costs is limited – it cannot be generalized to the overall population – it is the best information currently available on cost by province.

An estimated 2.4 million Canadians were living with diabetes in 2008-2009, according to a Public Health Agency of Canada report published in 2011. Data obtained from blood samples suggest about one out of five cases of diabetes remains undiagnosed, according to that same report.

Those with type 2 diabetes have high levels of glucose in the blood. If left unmanaged, there is an increased risk of developing long-term complications such as cardiovascular and kidney disease.

Leigh Caplan, a diabetes nurse educator at Sunnybrook, often sees patients who manage with struggling with the financial burden associated with their condition. Not only do they need to make a series of lifestyle changes but also these individuals often must deal with the extra costs.

“Managing a chronic condition involving lifestyle and behavioral changes is challenging enough,” said Ms. Caplan, who sees patients with diabetes ranging in age from 20 to 90. “Adding in extra costs, just adds to the stress.”

The cost of test strips ranges from $1 to $4 per day, depending on how often an individual tests their blood sugar.

In some cases, Ms. Caplan can suggest individuals test their blood sugar less often and at varied times to help reduce the use of test strips without compromising patient care.

“There are other hidden costs as well,” said Ms. Caplan, noting that those with diabetes often have to take other medications to lower their cholesterol and blood pressure. For example, many of these medications are not covered, except by third party insurance or if a patient is aged 65 or older.

So while the out of pocket costs are higher in the east coast provinces of New Brunswick,  Newfoundland and Labrado, and Prince Edward Island, there are ways to keep expenses down.

Helpful links:

The Burden of Out of Pocket Costs for Canadians With Diabetes

Diabetes: Canada at a Tipping Point

For further background visit the Canadian Diabetes Association’s website.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post The most costly places in Canada for patients to have diabetes appeared first on Healthy Debate.

That’s too often the reality in our hospitals. And, given the statistics, you’d think that hospital executives—especially in Ontario—would be pushing hard for more beds. Here’s a snapshot of the situation:

• Canada has 1.7 acute care beds per 1,000 residents, which is only half of the average per capita rate of hospital beds among the 34 countries of the OECD.
• The average occupancy rate for acute care beds in Canada in 2009 was 93%, the second highest in the OECD, surpassed only by Israel’s rate of 96%, according to OECD figures.
• Between 1998 and 2011, the number of all types of hospital beds in Ontario remained “virtually constant at approximately 31,000” while the population increased by 16%, according to a 2011 Ontario Hospital Association document.
• In 2012, Ontario’s per capita funding for public hospitals was the lowest of the provinces, according to the Canadian Institute for Health Information. This makes Ontario’s hospitals both very efficient and very pressed for beds at the same time.
• As Ontario struggles with a provincial deficit, hospitals in the province are facing flat-lined budgets for the next several years. Zero increases effectively mean funding cuts, given inflation and salary pressures.

It may come as a surprise that despite these statistics, Ontario Hospital Association president Pat Campbell is not advocating for more hospital beds.

Instead the OHA wants to see much more attention devoted to the capacity of the entire health care system and to improving the integration of care with sectors including primary care, home care, rehabilitation and long-term care.

“This is a roadmap that we don’t have,” Campbell said in an interview.

The United Kingdom and Australia consider an 85% acute care bed occupancy rate to be the safe upper limit, according to the OECD. But Campbell, who says the OECD’s figures on Canadian occupancy rates are probably accurate, is not interested in debating appropriate overall rates.

Occupancy has to be looked at on a service-by-service basis in individual hospitals, she says.

It’s a perspective shared by Keith Rose, the executive vice-president at Sunnybrook Health Sciences Centre in Toronto who is in charge of capacity planning. “On a day-by-day basis, we do juggle,” he says. “It is hard to get the numbers right, to balance fiscal reality with the demand for beds, with flu and seasonal variations.”

Rose says, for example, that occupancy rates in surgical critical care units, characterized by rapid turnover and short stays, should be about 75% to be efficient.

Improving integration

When Rose came to Sunnybrook (having previously worked at North York General and St. Michael’s Hospital), he says that lack of capacity meant some neurosurgery patients were being sent to the United States.

A creative solution, allowing patients to stay in Canada, came in the form of co-operation with the University Health Network and St. Michael’s Hospital. The Ministry of Health and Long-Term Care also boosted funding for neurosurgery.

This kind of cooperation could also work when hospital crowding becomes excessive, for example when flu season hits, says Mike Tierney, vice-president for clinical programs at The Ottawa Hospital and one of the editors of Healthy Debate. What is needed is “an ability to look at hospital occupancy and bed availability across a region in real time, rather than each hospital trying their best to manage on their own. This exists for critical care but not for medical/surgical beds.”

“It would be a mistake to add beds to a dysfunctional system”

Occupancy rates matter if you accept the premise that high rates lead to poor access for patients who need to be admitted from emergency departments, notes Michael Schull, an emergency room doctor at Sunnybrook who has published on wait times in emergency and overcrowding risks.

While wait times for patients who come to emergency departments have improved overall in Ontario after this was made a priority, there has been much less success in meeting target wait times for those patients waiting to be admitted from emergency departments.

Still, Schull does not advocate for more hospital beds. “It would be a mistake to add beds to a dysfunctional system,” he says.

Instead, focus has to be placed on improving patient flow through the system, says Schull. That will require defining measures of quality care, and creating incentives and processes to support primary care providers and community based-services in better managing patients where they live. This would avoid hospitalization or if they have to be admitted, help to get them to appropriate post-hospital care in a timely fashion.

Investment needed in Alternative Levels of Care

The sobering reality is that Ontario hospitals are tight for capacity largely because of the number of beds occupied by patients, most of them elderly, waiting for admission to another facility (such as rehabilitation or long-term care) or for support to return home.

These alternate level of care (ALC) patients typically occupy between about 12% and 20% of acute care beds in Ontario, and several recent reports have focused on trying to find ways to deal with the situation (see for example the OHA roundtable report).

David Walker’s 2011 report for the Ontario Ministry of Health and Long-Term Care, Caring for our Elderly Population and Addressing Alternate Level of Care, stressed the need for community level support, and for assessing and restoring the health of the elderly, so they can remain at home and so the hospital emergency ward “does not become the default” place to access care.

In the absence of early intervention in the community, too many elderly patients are admitted through the emergency to acute care, where their condition then takes a “downward spiral,” he says.

Administrators at Health Sciences North in Ontario have discovered the benefit of very active cooperation between the 459 bed Ramsey Lake Health Centre (formerly the Sudbury Regional Hospital) and the local Community Care Access Centre (CCAC). Working together, the result has been a reduction of ALC patients at the health centre from 133 to 78 in the period between September and December 2012, says David McNeil, vice president of clinical services and chief of nursing.

The challenge for the CCAC was to expand its capacity for community-based care, and some funding was received from the province for new programs including behavioural support and mobility programs. For its part, the hospital recruited a new geriatrician, gradually closed beds at the former Memorial Hospital site that had been used for ALC patients, and redirected money towards chronic disease management.

As well, community groups have been engaged “to help them understand that the hospital is no longer the centre of the universe,” McNeil says, adding that in the absence of concerted action being taken to boost preventive and convalescent care in the community, there will continue to be a “bottleneck” in the most expensive part of the system—that of hospitals and doctors. On the other hand specialists must work closely  with primary care and community providers to provide optimal care.

“We need to get the continuum of care right.”

The post Hospital crowding: despite strains, Ontario hospitals aren’t lobbying for more beds appeared first on Healthy Debate.

The Question: I would like to know if Canadian hospitals accept international patients and if so, what is the process? My brother needs a full check up.

The Answer: You would think hospitals would see patients like your brother as a way to generate monies to help pay for all the other patients who come through their doors but that is not the case.

Many hospitals across Canada do not currently accept international patients requiring non-urgent care – largely due to capacity issues – but that could change in the future. These hospital are full and so treating a paying patient could potentially mean displacing one covered under the Ontario Health Insurance Plan, which funds public health services for the province.

This is not the practice of every hospital. Some do charge a higher international rate to outside patients for procedures, so that they can use that revenue to open more beds. But that approach is taken after careful deliberation, after developing a policy for international patients, and usually for very specialized, lucrative procedures – not for routine check ups, which by the way are not even funded in British Columbia – unless, of course, the doctor has a reason for doing the examination.  Nova Scotia, Newfoundland and New Brunswick also do not cover them in symptomless patients.

No matter what decision a hospital makes on revenue generation, there is one thing that can never take place: allowing a paying patient to oust a Canadian patient who also paid for their health care through their taxes. When that happens, it violates the Canada Health Act, not to mention eroding citizens’ confidence in the health care system. It would be a devastating consequence.

Even the sheer act of trying to bring patients to a hospital carries with it significant issues surrounding liability.

“If we do anything to bring them here, you have to get private malpractice insurance,” according to Sally Bean, ethicist and policy advisor at Sunnybrook Health Sciences Centre. “It gets quite complex pretty quickly. “

If your brother came to the hospital with an urgent or medical emergency with or without insurance, however, he would be treated because “there is a legal and ethical obligation to provide care,” Ms. Bean said in an interview.

Dialysis is one example. If a patient requires it and can only obtain it in your country of origin by paying for it that makes it inaccessible for many patients.

“It’s tough because you would be sentencing people to death,” said Ms. Bean, noting that in some cases, uninsured dialysis patients have had treatment provided to them.

Other types of patients include those without legal status who came here on a visitor’s visa years ago but stayed, those waiting for their 90 days to pass before their provincial insurance kicks in, or tourists who have had a motor vehicle insurance accident but did not buy travel insurance. In the latter case, they would most certainly be treated here but there would also be efforts to recover the cost afterwards.

“You have to find that reasonable balance, think about what is the fair response, then we have to be resource stewards with our public health care dollars,” said Ms. Bean. “We have to ask: Is it justifiable? Are we disadvantaging Ontarians?”

As stewards of public funds, public institutions must be very careful on how it spends monies and to make sure it is doing so responsibly.

In answer to your question, my hospital does not allow patients to come here for check ups. And I expect many other Canadian hospitals do not as well. It may be that institutions do look for revenue-generating opportunities in the future, but those will likely involve super specialized procedures that they are particularly well known for performing.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Tax revenues, employment, competition and consumer convenience—these are the concerns that dominate discussion.  

But when it comes to any changes in alcohol policy, explicit consideration of the health impact of changes is typically absent.  “It’s a kind of chronic blindness,” says Norman Giesbrecht, senior scientist with the public health and regulatory policy division of the Centre for Addiction and Mental Health in Toronto.

“Look through media coverage of these debates over the years and you rarely see any reference to health.”

Alcohol second only to tobacco as health risk, says the WHO 

The absence of discussion of health is striking. Alcohol ranks second only to tobacco in terms of leading risk factors for death and disability in high income countries, according to the World Health Organization. 

Two LCBO related initiatives have recently attracted commentary.

Progressive Conservative Tim Hudak, leader of the opposition in Ontario, has called for an end to the LCBO monopoly.

LCBO expansion plans 

Meanwhile, under the Liberal government, the LCBO is expanding. Last August, the Ontario Ministry of Finance announced that the LCBO would open “approximately 70 new stores” over two years (there are now 620 retail outlets in the province). The planned expansion is in addition to the 13 new stores opened in 2011-12. Those new stores, together with two renovations, resulted in $14.5 million in additional sales, according to a press release from the Ontario Ministry of Finance.

And last month, in a move widely perceived to be a response to Hudak’s call for private liquor outlets in corner and grocery stores, the ministry announced the creation of LCBO “express” stores in 10 large grocery stores.

While several columnists and editorial writers have weighed in, the potentially negative health effects have only barely been touched on in the public debate.

Too High a Cost, A Public Health Approach to Alcohol Policy in Canada, a 2011 report from the Canadian Public Health Association, called for a moratorium on the new retail outlets pending careful review of the public health and public safety implications.

10% of adults consume more than 50% of alcohol, survey reveals

But neither the Ontario Ministry of Health and Long-Term Care nor Public Health Ontario was represented during the decision-making process about the LCBO expansion, according to ministry spokesperson David Jensen and Public Health Ontario spokesperson Nicole Helsberg.

While moderate drinking may not have a negative effect on health, high consumption and binge drinking are undoubtedly harmful. About 10% of the Canadian population consumes more than 50% of the alcohol consumed in Canada, according to an analysis of a 2004 Canadian survey. As well, the majority of alcohol consumed in Canada is consumed in ways that increase the health and safety risks of drinkers, the survey analysis states.

And although tobacco use is associated with a far higher mortality rate, the negative effects of alcohol lead to earlier deaths than do the effects of tobacco smoking, according to Jürgen Rehm, director of social and epidemiological research at CAMH.

In Canada, about 7% of deaths before age 70—or about 4,500 deaths—are due to alcohol-related events and illnesses (injuries, liver disease, digestive diseases and cancer), he told a recent seminar.

Rehm and other researchers have published research calculating the rates of mortality and years of life lost in Canada due to alcohol and well as the burden of disease and injury that can be attributed to alcohol.

Burden of harm from alcohol can be reduced

These burdens could be substantially reduced if effective public health policies were implemented, the researchers note. A set of such policies were recommended in the 2007 National Alcohol Strategy and in Too High a Cost.

Developments in other provinces are instructive. In British Columbia, a team of researchers has tracked the effects of a policy decision to allow partial privatization of liquor sales. The expansion of private outlets there began in 1988, but picked up after 2002.

Tim Stockwell, director of the Centre for Addictions Research of British Columbia, and fellow researchers analysed the five-year period from 2003-04 to 2007-08. They found that the expansion led not only to higher alcohol sales but also higher rates of alcohol-related mortality. 

The higher mortality rate was associated with the increased density of liquor stores. 

“In Canada there is hardly and conversation”

Stockwell says the impact on crime is the subject of a soon-to-be published paper, and adds that his team is doing further analysis of the situation with grant support from the U.S. National Institutes of Health. “The Americans are very interested in this because of the explosion of private liquor stores there. In Canada there is hardly any conversation.”

Despite the touted financial benefits of privatization, even provincial ministries of finance should be wary. Alberta privatized liquor sales in the early 1990s and, according to a study by economist Greg Flanagan, provincial revenues from alcohol sales went down even as alcohol consumption and retail prices rose.  

The LCBO states that even with the proposed expansion of stores over the next two years Ontario will have significantly fewer retail outlets per capita than other jurisdictions in Canada. A couple of years ago, the number of retail alcohol sales outlets in Ontario was 2.17 per 10,000 population 15 years and older, or the 2nd lowest outlet density among the provinces, according to CAMH figures.

A spokesperson clarified that of the 70 “new” stores heralded in a press release from August 2012, about two-thirds are replacements of old stores, with the balance being new stores. Still, many of those replacement stores are larger than the originals, and the volume of sales is expected to increase. (The LCBO did not respond to requests for their estimate of how much sales would increase as a result of the expansion.) 

Lack of ongoing monitoring of alcohol-related harm

The 2007 National Alcohol Strategy, developed by a wide range of stakeholders, noted that in 2002, “the cost of alcohol-related harm totaled $14.6 billion, or $463 for every living Canadian. This included $7.1 billion for lost productivity due to illness and premature death, $3.3 billion in direct health care costs, and $3.1 billion in direct law enforcement costs.” The CAMH’s Rehm notes that there’s been no new study of the epidemiology of alcohol-related health and social costs since 2002.

Without regular ongoing monitoring of these impacts, it’s difficult to draw attention to the issues, observes Gerald Thomas, senior research and policy analyst with the Canadian Centre for Substance Abuse.

Advertising and the media promote an almost exclusively positive image of drinking, and many people drink alcohol safely and enjoyably, Thomas notes. “But people also understand the dark side of alcohol, and yet there is almost a social denial about responding to it.” 

The post “Chronic blindness” to health impact of alcohol policies appeared first on Healthy Debate.

The Question: My mother is on six different medications from different pharmacies under the care of three specialists. How do I avoid a dangerous drug interaction?

The Answer: This is the kind of question doctors hear all the time and highlights some of the dangers of being on multiple drugs, particularly from multiple doctors and especially multiple pharmacists. There is no guarantee any of these health professionals are talking to each other and the risk of a dangerous drug interaction – when one drug changes the response to another medication – is high.

“There are literally thousands of drug interactions out there,” said David Juurlink, head, division of clinical pharmacology and toxicology at Sunnybrook Health Sciences Centre. “If I have a patient in the emergency department on 8, 10 drugs, there’s a very good chance we will find at least one, and possibly several, potentially dangerous interactions.”

According to Dr. Juurlink, “drug interactions are largely predictable and, as a result, largely avoidable.”

Some drugs are particularly prone to interactions. They include common cholesterol drugs (statins), antibiotics, anticoagulants and lithium – all of which, when taken with other medications, can cause potentially dangerous reactions.

Though it is rather well known, it is worth repeating that taking grapefruit juice can amplify the effect of certain drugs because more drug is absorbed from the gut. This is particularly true with statins – lovastatin, simvastatin and atorvastatin – used for the treatment of high cholesterol. Grapefruit juice taken with those drugs will cause too much of the active ingredient to enter the blood stream, resulting in side effects such as muscle damage.

Anticoagulants, which are typically taken by patients with atrial fibrillation, deep vein thrombosis or pulmonary embolism – abnormal blood clots that develop in a leg vein or travel to the lung – can lead to potentially catastrophic bleeding in the stomach and brain. Antibiotics and anti-fungal agents are two drugs that often don’t mix with them.

The post Dangerous drug interactions and how to stop them appeared first on Healthy Debate.

Jane is a 60 year old woman living in Waterloo, Ontario (a number of details of Jane’s case have been changed to protect her confidentiality). For several years she has been experiencing worsening back pain, which was recently diagnosed as spinal osteoarthritis (a degenerative condition that can cause severe back pain). The pain has grown so bad that she can no longer work, and has difficulty moving around her home. Her family doctor wants her to see a number of specialists, including a rheumatologist and spine surgeon. However, the wait to see a rheumatologist in her area is six months, and the wait to see a spinal surgeon is nearly a year. Jane’s family doctor is doing his best to manage her pain while she waits to see these specialists, but it has gotten so bad that only opioid painkillers seem to be effective, and he worries about the risks of using these medications for so long. Both Jane and her doctor wonder why she has to wait so long to see a specialist.

An incomplete picture

Despite almost a decade-long focus on wait times, Ontarians still don’t know how long they are waiting to see specialists.

Canada’s premiers committed to reducing wait times as part of the 2004 health accords, which spawned programs like Ontario’s Wait Times Strategy and the National Wait Times Initiative. Since 2003, Ontario has spent approximately $1.7 billion to reduce wait times for priority areas, including cancer surgery, cataract surgery, hip and knee replacement, and diagnostic imaging. Wait times have decreased in these areas and Ontario now has good wait times by Canadian standards, although not by by international standards. All provinces now monitor and publicly report wait times. Ontario publishes wait times for surgery and diagnostic imaging on the Ministry of Health and Long Term Care’s website.

However, the wait time data published in Ontario represents only the wait between a specialist’s treatment recommendation and a medical procedure such as an operation.

But before a specialist makes a recommendation, there is another wait time – the wait to see a specialist. According to Jon Irish, the Interim Provincial Clinical Lead for Access to Services and Wait Times for the Province of Ontario, the wait to see a specialist can be much longer than the wait between a treatment recommendation and a medical procedure.

While Ontario has made significant progress in measuring and reporting wait times for treatments, there are currently no mechanisms in place to measure or report on the length of wait times to see specialists at the provincial level.

How long are Ontarians waiting to see specialists?

There have been past attempts to measure waits to see specialists, but these have relied on patient or physician estimates, and are widely viewed as unreliable due to low response rates and sample bias. Despite the methodological problems with these studies, there is general agreement that the wait times to see certain specialists can be very long.

Recent research from the University of Western Ontario supports this view. According to this study, median wait times to see doctors in several specialties in the London area are longer than 80 days. The longest waits were to see a neurosurgeon, a gastroenterologist, a rheumatologist or a dermatologist. Only cardiologists, ophthalmologists, pediatricians and physiatrists had median waits of less than 40 days.

Long waits to see specialists raise the question of why, after such large investments in reducing wait times for treatment, there are no established provincial mechanisms in place to measure, report, and ultimately shorten wait times to see specialists.

This is in contrast to the United Kingdom’s National Health Service (NHS), which tracks wait times from the moment a patient is referred by their family doctor to the time when the patient receives medical treatment from a specialist. The NHS stipulates that 90-95% of patients should wait no longer than 18 weeks (126 days) from the time at which they are referred to the time when they are treated.

Measuring the wait to see a specialist

While the Ontario Ministry of Health and Long-Term Care does not currently monitor wait times to see specialists, an electronic referral tracking system for hip and knee replacements used throughout the Toronto Central LHIN may provide a model for how such a system could work. In 2005, patients being assessed for hip and knee replacement at Sunnybrook Health Sciences Centre were experiencing long waits to see specialists, and staff members had no way to check on the status of referrals.

In response, Sunnybrook introduced a centralized electronic referral system, which allowed staff to monitor wait times to see orthopedic surgeons.

When the Toronto Central LHIN introduced a new model of care for hip and knee surgery in 2007, it adopted Sunnybrook’s referral tracking system and extended it to all six of its hospitals.

The data collected by the referral tracking system is analyzed by Access to Care (a division of Cancer Care Ontario that is responsible for monitoring wait times for all surgery and diagnostic imaging in Ontario), which provides monthly and quarterly reports to the Holland Orthopaedic and Arthiric Centre, which acts as the central intake hub for hip and knee surgery for the Toronto Central LHIN.

According to Lucy Pereira, a program manager at the Holland Centre, data on wait times to see specialists has allowed the Holland Centre to improve their processes, leading to shorter waits for patients. For example, when reviewing the data they observed that their practice of sending a patient’s appointment dates to his or her family doctor was leading to confused patients and missed appointments. “Once we looked at the data, we saw that we should be contacting patients directly with their appointment date, which also gave us the chance to explain to them directly what to expect from their appointment,” says Pereira. Shortening the lines of communication has resulted in better informed patients and fewer missed appointments, which Pereira says has reduced wait times.

The challenge of measuring wait times to see specialists

“Measuring waits for specialists is more complicated than measuring waits for treatment,” says Irish. This is partly due to the sheer volume of patients waiting to see specialists. Irish explains that “only a certain percentage of patients who see a specialist are going on to have treatment, so the number of patients that are logged onto a ‘wait for treatment’ registry will be much smaller than those logged onto a ‘wait to see specialist’ registry.”

In addition, measuring the wait to see a specialist does not always tell the whole wait times story, because referals need to be processed and a specialist may require additional testing before making a treatment decision. Effective measurement of wait times needs to be able to capture both the wait to see a specialist and the wait between seeing a specialist and a treatment recommendation.

Monitoring and reporting of wait times for specialists must also be sensitive to the urgency of patients’ conditions. Patients with very urgent conditions must be seen more quickly, so their wait times must be tracked seperately, as is currently done with wait times for cancer treatment and cardiac surgery.

It can also be a challenge to standardize reporting. Record keeping often varies between specialists’ offices, so data from one office may not be comparable to data from another.

Monitoring waits to see specialists also comes with financial costs. Maintaining databases and performing large scale analysis costs money, and responsibility for reporting these wait times will add to the workload of specialists’ office staff.

Moving towards public reporting

After nearly a decade of investment in shortening wait times for treatment, plans finally appear to be in the works to begin publicly reporting wait times to see specialists in Ontario. Using the systems piloted by the Toronto Central LHIN’s hip and knee service, Access to Care is preparing to monitor wait times to see surgeons across the province, and will publicly report these wait times on the provincial wait time website.

“Access to Care is using a very similar process to what we used for wait times for treatment: first, we establish the process, second we collect the data, third we share the data internally to work through the data quality issues, and then we’ll be ready to report the data publicly,” says Irish.

However, neither Access to Care nor the Ministry of Health and Long Term Care have announced when public reporting of the wait times to see specialists will begin, nor whether the monitoring process will eventually be extended to include all specialists.

The post Why doesn’t Ontario report complete data on wait times? appeared first on Healthy Debate.

The Question: I have a friend who has just had a lumpectomy and sentinel lymph node biopsy for a small invasive lobular breast cancer. She has not yet met with the surgeon for her final report but knows that radiation to her breast will be one of the next steps in her treatment. She is quite reluctant to have radiation treatment and wonders about the risk of recurrence if she does not have radiation. Can you refer us to information that would help her with this decision – like what the likelihood of recurrence is without radiation and the long-term effects of radiation? She would like to have time to review this information before meeting with the radiation oncologist.

The Answer: Cancer treatment is an area where strict adherence to the rules is paramount if you want to ensure the best possible outcome – in this case, cure is the aim so we should ensure not failing our goal. Radiation treatment after lumpectomy is not an option but part of a package. There is a risk of the cancer returning if you do not undergo it.

“Many patients ask, if they can choose receiving radiation or not,” said Jean-Philippe Pignol, a radiation oncologist at Sunnybrook and professor of radiation oncology at University of Toronto. And in this case, “cancer treatment is not like choosing options when you buy a car. It is more a black or white thing and not receiving the appropriate treatment is a serious decision.”

Cancer patients such as your friend – who have undergone breast-conserving surgery – require radiation treatment. That’s because no matter how good a surgeon is at removing the tumor and surrounding tissue, there is always chance a couple of cancer cells – invisible to the naked eye – were missed.

Perhaps the easiest way of looking at it is to look at how much risk your friend is willing to accept. Without radiation treatment, the risk of the breast cancer recurring in five years is up to 30 per cent. In other words, the odds are almost one in three that the cancer will return in five years if she does not undergo radiation. When breast cancer returns, it is metastatic half of the time, which means it has spread to surrounding tissue, organs or bones, making cure impossible. The goals of care at that point will be lengthening survival as long as possible.

Compare that to patients who undergo radiation following breast cancer: their risk of recurrence over five years is about five per cent. In other words, they have a one in 20 chance of the cancer returning over five years. After five years, patients are often considered cured of the disease and if cancer returns after that period of time it is considered a new primary.

Theoretically, your friend is onto something: 70% of the patients may not recur after limited surgery there are likely breast cancer patients who do not require radiation whose survival would not be impacted but as of today, oncologists have no way of determining who these patients are.

“It’s rare that they would say maybe no radiation is necessary,” said Dr. Pignol.

There is no question radiation therapy represents a significant burden in terms of time and psychic energy: typically, patients are required to come every day, five days a week up to five weeks.

“Daily radiation is very disruptive,” said Dr. Pignol in an interview. “It has a great impact on patients’ lives and nobody is very pleased to go every day at a cancer center. It can be extremely draining, physically and psychologically.”

There are other side effects of radiation besides boredom, including burning on the skin – roughly 30 per cent of patients will experience it, but this side effect disappears typically after a week or two.

There have also been concerns that those who have radiation to the left breast may have a higher chance of coronary artery disease and myocardial infarction than those whose right breast is irradiated.

But according to Dr. Pignol, this seems untrue today as technological advances – in the form of CT scans – helps doctors better see what they are actually treating.

Though there is an additional radiation exposure, the chance of developing a secondary cancer due to the radiation treatment is almost undetectable.

Recognizing the arduous length of time for radiation treatment is a barrier to patients across Canada – especially those in remote areas who must travel to urban centers – doctors are studying ways to provide it in a compressed, shortened period of time. Even today, some patients can obtain radiation at certain Canadian centers over several weeks.

“We’re working on solutions,” said Dr. Pignol. “And since we cannot select who should receive radiation and those who should not, the best thing to do is to simplify the radiation treatment and make it more patient friendly.”

To that end, doctors are looking to see if they can compress that five-week radiation treatment, to shorter periods, including treatment in a single session using implanted radioactive seeds or delivery of radiation during surgery.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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The Question: Is it the family physician’s job to gather test results and explain the outcome of those tests – blood tests, ultrasounds, X-rays and CT scans – and offer options going forward? Every test I have had, the results are sent to my family doctor, yet he says it is not his job to explain it to me and offer solutions or options. Half of the tests are missing or have not arrived at his office. There is no follow up. Every time I see him it is like the first time but he has been my primary caregiver for 25 years.

The Answer: You raise a very good question: Whose job is it to communicate test results ordered by one physician and conducted by another? If, as you point out, the test results go missing, you have no way of knowing and may assume [wrongly] that there was a negative finding and all was well. It is for that reason, it is important to ensure that the loop has been closed on every test result.
According to Jocelyn Charles, Chief of Family and Community Medicine at Sunnybrook, a physician who orders a test – for blood, ultrasound, X-rays or CT scans – is responsible for responding to abnormal results and communicating these results to the patient.

“Specialists are expected to communicate their assessments, test results and recommendations to the patient and the patient’s family physician,” wrote Dr. Charles in an email. “The family physician can only discuss results from specialists if they are forwarded to him/her, ideally with a recommendation about any further investigations or treatment.”

Ultimately, it is the responsibility of hospitals, laboratories, radiology facilities and specialists to ensure that family physicians receive results and information pertaining to their patients in a timely manner, she said.

As the family physician has no way of knowing what tests were done by the specialist unless this was communicated to them, Dr. Charles suggested patients call their family physician before their appointment to ensure test results have been received.

In addition, patients can request the specialist’s office, hospital or laboratory to forward the results to their family physician prior to their appointment. Ideally, this should not be necessary, points out Dr. Charles, who said efforts are underway at her hospital to improve accountability for timely communication of information to family physicians.

Frank Martino, president of the Ontario College of Family Physicians, suggested patients remind the specialists that test results should be sent to the family doctor, providing the address if necessary right at the appointment time.

He pointed out that it is incumbent on him, as a family physician, to learn the results of any test he has ordered on a patient.

“I have concerns about this patient’s problem not getting the results,” said Dr. Martino. “And a physician who says it’s not my job to explain things to you. That’s part of the relationship.”

However, not every negative result – a test that has normal findings – needs to be communicated. There are, however, exceptions to that rule: the test ordered was due to a screening test, a suspected cancer, a biopsy, a bad diagnosis such as diabetes or anemia or a condition where symptoms have persisted, suggesting the need for more and different medical investigations to help aid in a diagnosis. In those cases, even though the test has not found anything, it’s vital for the physician to close the loop.

“It’s extremely important to communicate with your patient,” said Dr. Martino. “If there’s a particular test with a particular complaint, such as knee pain, then we go back to the blackboard, and come up with a plan for diagnosis.”

Tracking results, he points out, is not a simple matter and he is particularly concerned about these missing test results you mention.

“What we hope is that physicians have a process in place to reconcile test results that have been sent out to be done,” said Dr. Martino, who is a member of Queen Square Doctors family health team in Brampton. “And we hope that is a strong and fulsome system. Certainly, for critical results, there should be a system in place to reconcile those and act on them.”

I, too, am particularly concerned about your missing test results and for that reason I would suggest you contact your family physician to follow up. That may also be a good time to discuss how you are able to learn of test results with abnormal findings. I would also follow the advice of Dr. Charles and to call ahead of your appointment to ensure test results have been received and to request the specialist, hospital or laboratory fax or send these results to your family doctor.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Mason, who suffered from chronic obstructive pulmonary disease (COPD), died in Halifax this past May at age 73. COPD is a long term, progressive lung disease, caused in most cases (like Mason’s) by smoking, and characterized by shortness of breath and coughing.

Nauss, with her husband and three daughters, moved into her parents’ house to help out three years before the death of her mother.

“But when I moved in, I knew nothing about how to help her. I was taught how to help her relax, which puffer to have her use and, if I was at a loss, I just had to pick up the phone,” says Nauss.

That’s because she participated in two COPD research projects, led by Graeme Rocker, head of the division of respirology and professor of medicine at Dalhousie University.

The first project offered home education and a strong support network, and the second involved carefully tailored prescription opioid use for her mother. (Publication is forthcoming of Rocker’s clinical trial into opioid use with COPD patients.)

COPD is the 4^th leading cause of death in Canada, and is expected to shift up to 3^rd place by 2020. It is a chronic  illness— Nauss described the course of her mother’s illness as “one step forward and two steps back.”

Public awareness of the condition is limited, according to surveys, and Rocker says there’s also a  “climate of negativity” around the diagnosis.

Patients often have multiple hospital admissions, there is no fix for the underlying problem and, because COPD is primarily smoking related, some front-line health care workers are guilty of blaming patients for their condition, he explains.

The chronic illness primarily affects older Canadians, especially age 50 and up, and rates among women are rapidly approaching those among men, according to Ontario research, largely because of past increases in the number of women smokers.

Although rates have since dropped, almost one third (32%) of Canadian women over 15 were smokers in 1983, according to Statistics Canada, and there’s a lag time of 25 to 30 years before COPD develops, says Saskatoon respirologist Darcy Marciniuk, lead author of the Canadian Thoracic Society’s guidelines for managing severe COPD.

That lag means that Canada’s seven or eight million former smokers are at risk, and even if the five to seven million current smokers  ”were to quit today, the reality is that COPD would not go away any time soon,” he adds.  Social and economic disadvantage also have a significant negative impact on rates of morbidity and mortality among those with the condition.

Acute exacerbations of COPD—where an infection can cause serious breathlessness—are a leading cause of  hospital admission in Canada. “COPD does not have the eminence of diabetes, for example, but if you look at the statistics, it should,” says  Marciniuk.

Breathlessness is a symptom that “has long lagged behind pain as worthy of our research, educational and clinical endeavours,” Rocker has written.

In 2005, a nation-wide “report card” on COPD gave most provinces, with the exception of three (Quebec, Ontario and Manitoba), failing grades on how COPD was being managed by the health care system.

The Maritime provinces received particularly low grades, a fact that Dr. Rocker says spurred him on. Seven years later, his outreach program, launched first as a pilot/demonstration project and part of his research study, is now a core funded program within the Halifax District Health Authority and is a potential model for other jurisdictions and for other chronic illnesses.

The Halifax program is called INSPIRED, which stands for Implementing a Novel and Supportive outreach Program of Individualized care for patients and families living with Respiratory Disease. The INSPIRED team is comprised of three respiratory therapists, a spritual care practitioner (with a PhD in COPD care and a masters degree in medical education) an evaluator and Dr. Rocker, for the equivalent of three full-time positions.

A 2012 report on INSPIRED indicates that 50 patients who participated had, compared to the time before they entered the program, 73% cent fewer emergency ward visits (from 110 to 30), 78% fewer per cent hospital admissions (68 to 15) and spent 80% fewer days in hospital (740 to 148). Rocker says the savings represented by these reductions far exceeds the annual cost of the program, which he estimates at about $250,000.

The reductions in health care use among Halifax area patients of INSPIRED are somewhat higher than those for successful projects in other provinces, such as the Saskatoon Health Region’s LiveWell program, which doesn’t place as much emphasis on in-home care, but instead focuses on maintaining mobility through group exercise programs.

The LiveWell program evolved from a COPD specific program that was launched in the region in 2002. “One way we were able to secure resources is by couching COPD care with other chronic diseases,” says Marciniuk, who helped create the program. (In 2005, the program expanded to include chronic illnesses such as diabetes, heart disease and arthritis.)

Marciniuk notes that COPD programs like LiveWell and INSPIRED, as well as similar initiatives in Montreal and Calgary that place an emphasis on outpatient  care, are “gaining traction” because of evidence of their effectiveness at reducing unnecessary hospital visits and improving patients’ quality of life. For his part,  Rocker would like to see his program replicated in other health authorities in Nova Scotia, noting that his team could help support such start ups.

The first project that Nauss participated in was a qualitative research project that involved extensive interviews with family members and patients with advanced COPD, many of whom were virtually housebound.

Respiratory therapist Joanne Young had worked in palliative care in the community in New Brunswick before joining Rocker’s research team and co-authoring research reports. But she says that in her role as a researcher/interviewer, patients and their caregivers told her much more about their lives than she was told as a clinician working in the community.

“We usually get so caught up in what we have to do, and this was a chance to just sit and listen to people’s experiences, not to bias what people were telling me. It gave me an opportunity to reflect on my own practice and it changed my thinking,” she says.

One thing that struck her forcefully was the gap between access to services and efficient use of services—a gap that can often be accounted for by how much (or little) insight primary care providers have into COPD and how much they are involved in coordinating a patient’s overall care.

COPD is a disease characterized by loss—of breath, of mobility, of power, often of work—that also puts a great strain on relationships, says Rocker. As a result, involving and supporting caregivers is critical to the success of any program, he says.

There’s no substitute for seeing patients in their homes, say Rocker and Young. “When you see people in hospital, you lose so much about who they are, about what impacts their decisions,” says Young.  “When you see them at home, there is a shift in power . . . we are guests in their space, they feel more comfortable, they tell us more, and so you can broker a better relationship,”

The changing demographics of COPD create new issues, she notes. With more women being diagnosed, more men are playing the (often unfamiliar) role of caregivers. And as adults are diagnosed at a younger age, they can be more challenged by financial issues and the cost of medications, she notes.

Rocker emphasizes that a key to the success of the INSPIRED program is the work of the team member, Catherine Simpson, who can offer spiritual counselling to patients and their families, as well as helping them with advance care planning discussions.

“That was a little difficult,” Nauss says, of the discussion about what medical interventions her mother would accept near the end of her life. “But I’m so glad we had the discussion early on. It helped immensely. For the last one to two years, any time my mother had a bad attack [of breathlessness], I had the papers, I knew exactly what she wanted, I didn’t have to think.”

Her mother said she did not want to be placed on a breathing machine or undergo resuscitation if her heart stopped, but she would accept a mask and medications if she couldn’t breathe.

Joyce Mason’s obituary suggests donations to the Nova Scotia Food Bank or to Dr. Rocker’s studies on respirology, and continues: “… for if it wasn’t for Dr. Rocker and his team, we wouldn’t have had Joyce our mother, grandmother, sister and friend, for as long as we did.”

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The Question: How does alcohol consumption affect diabetes? I work with street people who don’t always eat properly. Does it worsen their diabetes?

The Answer: Intuitively, you would think that drinking would cause a spike in insulin, given the sugars involved in wine, spirits and other alcoholic beverages. But in fact, alcohol can cause the opposite problem – hypoglycemia or low blood sugar – oftentimes, many hours after a drink has been ingested, making it particularly very risky for those diagnosed with diabetes.

Those with diabetes who imbibe require vigilance in the form of testing blood sugars. In some cases, it can be as simple as remembering to eat before drinking and reducing insulin. In others, it may be that drinking to excess and falling asleep late could trigger a hypoglycemic attack in the form of seizures.

“Alcohol can cause delayed hypoglycemia many hours later,” said Jeremy Gilbert, Sunnybrook endocrinologist. “It’s not necessarily predictable, so that makes it even more challenging. You don’t even know if it’s going to happen.”

More than nine million Canadians has diabetes or a condition called pre-diabetes, which is defined as a person whose blood glucose is higher than normal but not high enough to constitute a case of diabetes. Left unchecked, those with pre-diabetes are at risk of developing type 2 diabetes, according to the Canadian Diabetes Association.

Provincially, more than 1.2-million people in Ontario have diabetes and by 2020, it is projected that number will increase to 1.9 million.

Diabetes can be particularly deleterious to health: it is the number 1 cause of dialysis, blindness and non-traumatic amputations. Eight out of 10 of patients with diabetes will have a cardiovascular event and they have four times the risk of stroke compared to those without the diagnosis.

Since alcohol can cause a temporarily high sugar but also make sugars low, the overall advice of endocrinologists, said Dr. Gilbert, assistant professor at University of Toronto, is that those with diabetes should not drink excessively and if imbibing at all should check their blood sugars often. He even recommends patients set their alarms for the middle of the night to check their sugars.

“It’s not forbidden,” he says “but moderation would be encouraged.”

For street people who have diabetes, their control of their disease could be potentially worse due to more variable blood sugars as they experience highs and lows.

“It can really cause a lot of variability in the blood sugars thereby adding to the roller coaster phenomenon, he said. “ People who live on the streets often have other barriers to achieving proper blood sugar control and drinking may make it that much worse.”

In answer to your question, drinking can worsen the diabetes in patients, whose homes are the city’s streets, making them vulnerable to hypoglycemia.

For more information, visit www.diabetes.ca

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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“We need to shift our focus” away from line-by-line scrutiny of hospital, drug and long term care spending  towards “what we spend on patients,” Deb Matthews, told HealthAchieve, the annual meeting of the Ontario Health Association, last month.

Such a focus will help provide better care, and better value for dollars spent, she said.

Of the province’s 13.7 million people, a mere 1% (about 137,000 people) accounted for 34% of Ontario health care expenditures in 2007, according to a report from the Institute for Clinical Evaluative Sciences (ICES), which tracked most major health care costs.

To “qualify” to be in the top 1% category, health care expendiitures for each person were at least $33,335 a year. Altogether,  the 1% accounted for $7.8 billion of the total spending that year of  $23 billion, according to the research.

At the other end of the spectrum, 50% of the Ontario population accounted for about 1% resources in 2007, representing spending of less than  $181 per capita.

Such findings are not new or unique to Ontario. Manitoba research from more than a decade ago revealed the same trend, as has research from the United States, and the United Kingdom has been studying how to act on the information. But a spotlight is being directed to the issue because of the increasing emphasis on accountability and the sustainability of health care, as well as changing demographics and the aging of the Canadian population.

Who is in the 1%?

That the most ill people use the most health care resources is appropriate. But this information raises some important questions: who makes up the 1%, can their health care needs be better (and more cost effectively) managed, and if so, where should investments be made or reallocated?

The individuals who make up the 1% vary from year to year—some remain top users of health for a period of time, while some transition out of the category, notes Ken Lam, whose PhD thesis involved a close examination of Manitoba data.

The Ontario data reveal that about 25% of the highest cost patients remain in that category in the following year, according to health economist Walter Wodchis, who was lead author of the ICES report.

Among the high users are individuals at the end of their lives, people with chronic and sometimes multiple illnesses, accident/trauma survivors, and infants with high health care needs. Clearly, “one size does not fit all” when it comes to addressing the needs of this diverse group, notes Lam, who teaches at York University’s school of  health policy and management.

“Skewed” use of health care resources exists for all ages, conditions

The ICES research indicates that the vast majority (~80%) of those in the top 1% category in Ontario are age 65 and older. But Lam stresses that although the elderly are often pointed to as high users, the unequal utilization of health care resources is a persistent feature for the elderly and for all other age groups. (Those who are over-65, and are in the top 1% category in Ontario, represent about only  6% of the over-65 age population.)

The “skewing” trend  also persists among those with chronic conditions, such as diabetes or asthma, as only a small proportion of sufferers account for a large proportion of health care expenditure, according to research he co-authored.

The health care resource that is most “skewed” towards a small proportion of the population is in-hospital acute care; physician and prescription drug utilization are somewhat more evenly distributed among the population, according to Lam’s Manitoba research, which did not include long term care.

Ontario follows much the same pattern, but also shows that for those over 65 years in the top 1%, the vast majority of expenses are for acute care and long-term care, according to research by Wodchis and others.

Significant structural and funding changes are needed in order to better manage most of the top 1% patients, observers argue.  “We’re good at acute care but not good at providing chronic care or home care.” says Jeff Turnbull, chief of staff at Ottawa Hospital and a former president of the Canadian Medical Association. “We need substantive change. Up to now, we’ve just been playing around the edges.”

Acute care  is now “default” for chronic care management

The problem goes back to the fact that when medicare was established and public coverage was limited to hospital care, physician services, and in-hospital prescription drugs. Health care money is in dedicated “silos” and reallocation is challenging, Turnbull notes.

Still, a number of initiatives are underway to find ways to better manage and integrate care for high users.

For example Wodchis and colleagues, in a project being funded by the Ministry of Health and Long-term Care, are focusing on finding ways to better address the needs of those 65 years and older in the top 1% category, most of whom suffer from one or more chronic diseases.

Better coordination of care is needed to avoid situations where, for example, a patient with both heart failure and kidney failure may be told to take a lower dose of a diuretic (which reduces water in the body) by the endocrinologist and a higher dose by the cardiologist, Wodchis said in an interview.

One challenge with this approach will be to decide which patients qualify for more intensive case management, recognizing that others with similar care needs may benefit from this approach. For example, if the focus of the intervention is on the highest 1% of health care users, is it acceptable that the next 1% not receive the same services?

The “assess and restore” approach to the elderly

Within Canada, Ontario has the highest rate of alternate levels of care —people waiting in hospital to return home, or be admitted to a retirement homes or long term care facility—according to a 2011 report by Dr. David Walker.

In the report,  Walker argued that primary care providers must place a priority on care for the elderly, identify those at risk and actively manage their multiple challenges.

Walker called for an “assess and restore” approach to the frail elderly, aimed at restoring their level of functioning, instead of allowing them to languish in hospital (or elsewhere) while their condition deteriorates.

Along the same lines, long-term care facilities should “focus a portion of their capacity on cyclical, restorative, transitional and respite care programs, while maintaining permanent placement for those with more complex needs,” Walker’s report stated.

Too many of the 1% of high users, such as those with chronic illnesses and people at the end of life, “are forced into the not-useful existing paradigm” of acute care, Turnbull argues. This is an issue being explored by the Canadian Research Network for Care in the Community

Health Minister Matthews appears ready to take action by focusing on those who have high health care needs. In her address last month, she talked about the creation of health networks that will link all the health care providers in a given geographic area who are providing care to individuals with a focus on those using who utilize a high proportion of health resources.

These health link networks would work to ensure that there is one “most responsible provider” for each patient.  How these networks would be created and implemented within the current system of healthcare delivery has yet to be elaborated.

For more coverage on this issue, see the Health Care Checkup in the Toronto Star.

The Ministry of Health and Long Term Care has announced the launch of 19 Health Links.

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The Question: Before I undergo a knee replacement, I have to see an anesthesiologist. I know the visit is to go over details to put me under during the operation but I am also very worried about how to control my pain both in hospital after being sent home. How and when do I bring this up?

The Answer: You have two issues with regard to pain: one immediately after surgery while in hospital and another when you go home. While most surgeons write a prescription for pain medication after surgery, I would advise you to use your appointment with your anesthesiologist to see what can also be done about pain control after you leave hospital. Oftentimes, patients are sent home with a one-size-fits-all pain plan that may work for most but certainly not all. Ideally, you want something more personalized.

“Patients list pain control after surgery as one of their major concerns” said Dr. Colin McCartney, staff anesthesiologist and director of anesthesia research at Sunnybrook Health Sciences Centre. “And some patients are very reluctant to take medications after discharge and would rather suffer pain and limitation of activity instead.”

Severe postoperative pain can cause an increase in blood pressure and heart rate and it may decrease ability to breath deeply and cough leading to greater risk of cardiac problems and chest infection after surgery. And because poor pain control inhibits movement, those with limited mobility are predisposed to other risks such as blood clots, according to Dr. McCartney, who is also a pain specialist.

“There is evidence that those patients who suffer severe pain immediately after surgery are at greater risk of suffering chronic pain months or years afterward,” he said.

While pain and arthritic changes in your knee likely brought you to hospital to undergo a replacement, about 30 per cent of patients who have that type of operation will still be in chronic pain one year after surgery.

You also mentioned you would be put under for a total knee replacement.

There are typically two choices of anesthetic for a knee replacement. A general puts you in a deep sleep. A regional numbs a specific area of your body without affecting your breathing or brain and is often combined with sedation.

Generally speaking, the preferred option at my hospital is to use a regional for knee replacement, largely due to the benefits of better pain control and fewer side effects such as nausea and vomiting after surgery, according to Dr. McCartney.

However, the type of anesthetic – regional versus local – can change depending on where you live or what hospital you are admitted to. Since there are significant variations by city and hospital, ask your surgeon or anesthesiologist if you can choose.

In answer to your question, when you visit your anesthesiologist before knee surgery, ask not only about the type of anesthetic during the operation but also about pain control methods both in hospital after surgery and for when you go home as it is vital to your recovery.

Typically, patients require stronger pain medications in hospital. Some patients are sent home with combinations of anti-inflammatory medication such as ibuprofen with another medication that contains an opioid pain reliever such as codeine + acetaminophen or oxycodone + acetaminophen.

As well, most hospitals have an acute pain team that can give advice on pain control.

Visit the Canadian Orthopaedic Foundation website, where you can virtually connect with other patients who have gone through the same operation.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

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Since that time, the College of Physicians and Surgeons of Ontario has begun regulating and inspecting these clinics.

In the last five years, quality in private colonoscopy clinics appears to have improved, and for the first time, Cancer Care Ontario (CCO) is exploring expanding its provincial colon cancer screening program into these clinics.

Quality and access concerns

Concerns about quality in privately owned colonoscopy clinics began in 2007, with the release of several research papers.  This research showed that roughly 13% of colonoscopies in Ontario between 1999 and 2003 were not completed (the scope did not make it all the way through the colon), and that a leading risk factor for an incomplete procedure was having the colonoscopy performed in a private clinic. In addition, the research suggested that there were more missed cancers in private clinics than in hospitals. The researchers concluded that “colonoscopy practice in office settings may be suboptimal.”

Other research raised concerns that private colonoscopy clinics were more likely to screen patients more frequently than recomended by guidelines.

Around the same time, concerns were growing that some private colonoscopy clinics were charging patients user fees, in violation of the Canada Health Act.  Data collected in Toronto in 2009 suggested that about a third of patients receiving colonoscopy in private clinics were being charged to access the services. This led to criticism from groups such as Canadian Doctors for Medicare, who argued these fees were against the law in Ontario.

Low funding and no regulation

One of the main contributors to quality and access problems within private colonoscopy clinics was less generous per case funding than is provided to hospitals.  When a colonoscopy is performed in a hospital, the doctor performing the procedure is paid by the Ontario Health Insurance Plan (OHIP) for providing the service and the hospital’s expenses are covered through its global budget. In some high volume hospitals there is additional program funding associated with Cancer Care Ontario’s provincial colon cancer screening program.

When a colonoscopy is performed in a private clinic, the doctor is paid by OHIP, but the clinic itself receives no money from the government and no funding from CCO.  Therefore, the clinic must find other ways of covering operating expenses (including purchasing equipment, sterilization procedures, staff, etc.).

This lack of funding made it difficult for private clinics to maintain the same quality standards as hospitals. In order to remain profitable, some private clinics may have rushed procedures, leading to incomplete colonoscopies. Others did not maintain the highest standards of sterilization. Some private clinics turned to various forms of alternative financing, such as charging patients for anesthetic or mandatory counseling with a dietitian.

Sherif Hanna, head of surgical oncology at Sunnybrook Hospital and former director of the Kensington Clinic, a private clinic identified by several experts as having high quality standards, says “when a clinic is only billing OHIP, [high quality] is not feasible.” At Kensington, he explains “we were operating at a loss – the only reason we were able to stay afloat was the Kensington Foundation,” a charitable foundation that helps fund the clinic.

The other main contributor to quality and access concerns in private clinics was a lack of regulation. Prior to 2010, the College of Physicians and Surgeons of Ontario (CPSO), the organization responsible for regulating Ontario’s doctors, did not have jurisdiction over private colonoscopy clinics.  As a result, there was no organization responsible for establishing and enforcing quality standards for these clinics.

Without an independent organization to establish and enforce quality standards, there was no mechanism in place to ensure quality of care in private clinics was at the same standard as the care provided in hospitals.

At the same time, without oversight from the College, regulations prohibiting user fees were not enforced consistently, creating potential barriers to access for patients.

CPSO regulation

In recognition that surgical services and other medical procedures were moving outside of hospitals, the CPSO and the Ontario government moved to create a regulatory framework for community-based clinics that would be providing these services.

“The goal,” explains CPSO registrar Rocco Gerace, “was to get a single standard of care for the entire province, regardless of where a procedure is performed.”

In 2010, the CPSO was granted jurisdiction over procedures performed at a range of Out-of-Hospital Premises (OHP), which included private colonoscopy clinics. The CPSO established quality standards for all OHPs, and initiated an inspection program for these clinics.

The CPSO also developed a specialized guide for colonoscopy clinics, which advised each clinic to form a quality assurance committee to establish standards, monitor activity and improve performance. These committees are mandated to ensure that clinic care is appropriate to the volume and scope of service provided.

The CPSO also inspects private clinics on a five year cycle. Clinics are evaluated on the basis of premises, staff requirements, patient admission requirements, procedure standards, infections control standards, and quality assurance activities.

In 2011, the CPSO completed 104 assessments of out-of-hospital premises, of which roughly 50 were private colonoscopy clinics.  54% of the facilities received a full pass, 43% passed with conditions and 3% failed.  Doctors working at facilities that failed inspection were barred from performing any procedures at these facilities.

There appears to be wide agreement in the medical profession that the CPSO’s enforcement activities have had a dramatic effect on quality in these private clinics.  According to Dr. Michael Gould, a gastroenterologist and Medical Director and President of the Vaughan Endoscopy Clinic, “the quality has elevated enormously.” He thinks that there remains room for improvement with the process, “but that’s always the case with a first process… The College started in the right place and it will continue to improve over time,” he says.

Integrating private clinics into the provincial screening program

Linda Rabeneck, Vice President of Prevention and Cancer Control at Cancer Care Ontario, explains that until now CCO has declined to inlcude private clinics within its provincial colon cancer screening program, because of concerns that they were unregulated and the evidence that their quality was inferior. As a result, CCO has contracted exclusively with hospitals, which are both more expensive and have longer wait time than private clinics. CCO believes, however, that the time is right to test whether private clinics are ready to become a part of the provincial screening program.

After the CPSO began to regulate private clinics, CCO invited these clinics to participate in a pilot where they would report on their activities (volumes, indications, quality measures, etc.) through the same electronic system used by hospitals to send data to CCO.  While some clinics refused to participate, many others have begun reporting to CCO. This reporting infrastructure has provided CCO with the ability to monitor quality across the province, and compare the performance of participating clinics and hospitals.

This October, CCO invited facilities who have passed CPSO inspection and use their reporting infrastructure to contract with CCO to provide a set number of colonoscopies under its provincial screening program.

Doctors at private clinics will continue to bill OHIP for their services, but CCO will provide some additional funding for contracted procedures to the clinics to cover operating expenses.

According to Rabeneck, ongoing funding for private clinics will depend on clinics continuing to pass CPSO inspections and report their data to CCO. CCO will also require every private facility it contracts with to have back-up hospital arrangements with doctors who have hospital admitting privileges.

Rabeneck believes the funding from CCO should reduce the incentive for colonoscopy clinics to charge their patients for access to services. These funds also will cover the necessary costs of running a colonoscopy clinic in the community, which will make it considerably easier for private clinics to maintain the same high standards as hospitals.

Gould believes this pilot program will benefit everyone. “This is the right way forward,” he says. “It makes no sense to keep colonoscopies in hospitals when they can be done for half the cost in the community.” He predicts that the program will not only save the health care system money, but also free up hospital resources to focus on more acute care.

Hanna agrees, and believes the additional funding available from CCO will provide a powerful incentive for private clinics to ensure the highest quality in order to qualify for the program. “A rising tide raises all boats,” he says, “clinics will either raise their standards to compete, or they will close.”

A thoughtful focus on quality

Five years ago, the quality of care provided by Ontario’s private colonoscopy clinics was extremely uneven. Today, these problems appear to have been largely addressed through regulation, and these clinics are on the verge of being integrated into the provincial colon cancer screening system.  For Rabeneck, “it’s a nice example of what can be accomplished with a thoughtful focus on quality.”

For more coverage of access problems in privately owned clinics, see our partner article in the Toronto Star.

The post Improving quality and access in Ontario’s privately owned colonoscopy clinics appeared first on Healthy Debate.

The Question: I have run out of conventional medical treatments for my cancer, which has metastasized. How do I join a clinical trial? How do I increase my chances of receiving the drug rather than taking a sugar pill?

The Answer: For this question – a common one here at Sunnybrook’s Odette Cancer Centre – I went to Scott Berry, who in addition to being a medical oncologist is also a bioethicist.

“As an oncologist, we have made great advances in improving outcomes for people with cancer but we need to do better. The best way of doing this is to study new treatments so we put a high priority on offering our patients the chance to take part in a clinical trial,” Dr. Berry said in an interview in the cancer center, the second largest in Canada.

Currently there are more than 650 clinical trials taking place across Canada for all different forms of cancers.

Trials aren’t always for patients who have run out of conventional treatments. And most are not placebo controlled so the worries over a sugar pill are few. Most trials today compare a new treatment to a current one.

More broadly, a trial is an intervention that can be a drug, surgery, device, radiation, diet or even an exercise program. The results can be compared to a new medical approach, a standard one already available or a placebo. It can even be compared to nothing at all. The purpose is medical knowledge.

For some patients who have exhausted other conventional therapies, a clinical trial can be seen as a lifesaver. Doctors always try to give patients the full picture: that as much as this may lengthen their lives or reduce their symptoms, it doesn’t work in every patient every time.

“We have to balance this hope and encourage people. But we have to remind them that although we hope that people getting the new treatment will do better, in some cases, they could do worse,” said Dr. Berry. “And unless we do this type of study we will never know for sure.”

Indeed, a dozen years ago, there was little oncologists could provide to patients whose colorectal cancer had spread. Back then patients faced an average life expectancy of one year. Now, there are five new drugs available and many patients live twice as long.

Clinical trials can last months or years as researchers try to determine the safety of a given intervention and, whether it helps, harms or is no different than what is currently provided. Certain outcomes are measured in patients, often to the current available treatment.

A significant issue for patients and clinicians is informed consent, said Dr. Berry, who is also a bioethicist.

“We tell them why we are doing the trial, the background information, but we do not promise too much,” he said.

“I think the thing is we hope things will be better but we really don’t know that.”

Some patients want to sign up right away after hearing details, going over the risks with the oncologists or nurses, but Dr. Berry always tells them to sleep on it. Most come back, wanting to discuss options.

“Some are uncomfortable with the randomness of it,” said Dr. Berry.

There are four phases to clinical trials, with phase 1 being the earliest, smallest – recruiting up to about 30 patients – and are often referred to as dosing or safety trials.

Phase 2 trials try to find out what types of cancer the drugs work for and to get a better idea of side effects.

If it works well, it goes onto Phase 3 trials, which are large trials [hundreds or thousands of patients recruited at many centres] that compare a new treatment with the standard one, different doses or ways of giving a standard treatment. These trials are randomized, which means that patients are put into two groups: one to get the new treatment and the other to get the standard or placebo [a sugar pill if there is no standard treatment. That type of study is the gold standard for establishing new treatments.

“We are very clear about the [treatment] goals,” he said. “There are enthusiastic people who want something done but they have to be willing to understand what the goals are.”

Even if a clinical trial is not available at your hospital, it could be elsewhere, such as other teaching or community hospitals.

Below are links to clinical trials across Canada.

Canadian Cancer Trials

Ontario Cancer Trials

Questions to Ask About Clinical Trials

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post What cancer patients need to know about clinical trials appeared first on Healthy Debate.

The tentative agreement, which will run until March of 2014, will affect doctors in a number of ways and also has implications for the wider health care system. In this article, we revisit some of the major themes Healthy Debate has reported on over the last year and a half, and examine how this tentative agreement will, or will not, address them.

Primary care

Ontario has made substantial investments in primary care over the last decade in an attempt to improve quality and access, and also improved the recruitment and retention of family doctors. The return on these investments has been mixed.

These investments have significantly increased the number of Ontarians with a family doctor. Many more doctors are now working in team-based practices, and some of these teams now include a range of other health care providers, like dieticians and counselors.  Morale has improved significantly among primary care providers, which experts say has improved both recruitment and retention of family doctors.

However, not all the new care models are performing as well as hoped. Some clinics do not provide the evening and weekend appointments required by their contracts, and many Ontarians cannot get a same or next day appointment with their family doctor. As a result, emergency room and walk-in clinic use is one of the highest among developed countries. There are also concerns that new capitation payment systems for family doctors (where doctors are paid per patient, rather than per service) do not encourage them to take on patients with complex medical needs, or encourage them to “de-roster” these patients and bill the government fee for service. In response to these concerns, the government delayed and then capped the entry of new family doctors into all enrolment models, which led to concerns that the spread of interdisciplinary care would be halted.

The tentative agreement will affect primary care in a number of ways.

Primary care groups will be required to provide more after hours care than in the previous agreement. The number of additional after hours requirements will vary according to the group’s size. While increasing the after hours requirement will likely improve evening and weekend access, the Auditor General identified a number of other barriers to patients accessing after hours services. Currently, it is not specified when physician groups must offer after hours services, so many clinics do not appear to offer services on Fridays or weekends. Also, some physician groups operate out of multiple locations, but the after hours service requirements need only be offered at one location, which may not be convenient for many of the enrolled patients.  Additionally, compliance with the previous requirements was not monitored by the ministry. The new tentative agreement includes no language about monitoring and does not specify locations or days upon which after-hours services must be provided, which together may dull the impact of these new requirements.

Another key change is the introduction of an “acuity modifier”, which is meant to compensate family doctors who care for complex patients more fairly than under the current system. The precise size per patient of this modifier has not yet been determined, but according to the agreement there will be an interim modifier put in place while an acuity-adjusted capitation model is developed over the next two years. $40 million has been set aside to develop and implement this initiative – approximately 1% of the total budget for family doctors and general practitioners – so it is unclear at this point how big an impact this will have . As with other parts of the tentative agreement, the development of the acuity modifier is being delegated to a working group. It is yet to be seen whether an effective acuity-adjusted capitation model can be developed, and whether the $40 million that has been earmarked will be enough to implement it effectively. If an effective acuity modifier is not developed, some family doctors may continue to de-roster complex patients and bill fee for service, a practice that will continue to be allowed under the new tentative agreement.

An important element of the tentative agreement for patients is the expansion of resources for interdisciplinary health team provider resources to a wider array of primary care practices (such as dietitians and pharmacists). Currently, only community health centres and family health teams are able to offer their patients publicly funded, comprehensive interdisciplinary care, but under the new agreement other family physicians will also be eligible for these services. This signals an important commitment on behalf of both the government and doctors to continue to move towards an interdisciplinary, team-based approach to primary care. However, the agreement does not specify how much money is to be committed to this initiative, so it is unclear at this time whether it will be sufficient to provide access to interdisciplinary care to all Ontarians.

House Calls

Through much of the 20^th century, doctors have moved away from doing house calls, in part because of the shift towards more technologically sophisticated care and the ability to see more patients in the office than in homes. In recent years, there has been a renewed interest in house calls, because increasing numbers of chronically ill patients find it difficult to visit doctors’ offices. However, a number of barriers remain to increasing home visits. Under the current system, family doctors providing comprehensive, home-based primary care earn much less than what they could earn if they saw patients in their office. In the last election, the Liberal government pledged to commit $60 million to expanding house calls.

The tentative agreement stipulates that enhancements will be made to the existing bonuses for primary care doctors who provide home calls, and establishes a formula that takes into account the number of patients a doctor provides home services to (and the number of visits). However, the agreement does not establish criteria for ensuring that the resources for home visits are used for homebound, frail and medically complex patients, and not for less frail patients. The development of these criteria is to be delegated to a primary care working group.

Appropriateness of diagnostic tests

There is growing consensus among doctors and policy makers that steps must be taken to improve the appropriateness of diagnostic tests. Some tests can cause harm directly, while others can lead to unnecessary medical procedures, so it is important for the well-being of patients to reduce the amount of unnecessary diagnostic testing (while at the same time ensuring timely access to necessary tests). Policy makers are also eager to reduce testing that offers no clinical benefit in order to help control the growth of health care spending.

The tentative agreement includes a number of provisions to reduce unnecessary testing. The agreement will remove or restrict some specific tests, including folate, asparate amniotransferase, chloride, creatine kinase blood tests and thyroid scans. It will also adjust the frequency with which certain screening tests will be reimbursed, including screening for colon cancer and cervical cancer. Doctors will be encouraged not to order several tests for low risk patients, such as annual stress tests, pre-operative cardiac testing in people without heart disease, and routine pre-admission chest x-rays. The agreement also establishes that the Expert Panel on Appropriate Utilization of Diagnostic and Imaging Studies will continue its work, and a new working group with a distinct mandate will be established to address the appropriateness of a number of other tests and procedures, such as the use of blood glucose testing strips.

It is unclear how much of an impact the tentative agreement will have on the frequency of unnecessary testing. The specific tests slated for removal make up only a tiny fraction of tests performed in Ontario, while many ‘big ticket’ items, like the use of blood glucose testing strips, have been left to a future working group to address. Nor is it clear that the volume of activities identified in the agreement under “phase 2”, which range from prescription tracking mechanisms to practice patterns in cardiac services, are within the abilities of a working group to tackle effectively.

E-consultations

A recent pilot study in the Ottawa area has suggested that e-consultations (where specialists connect with family doctors or patients over the internet) hold promise for better communication among doctors, and shorter wait times and less travel for patients. E-consultations between patients and specialists could also be used to provide specialist consultation to remote communities, which would save patients both the trouble and expense of traveling to large centres to see specialists.

The tentative agreement includes a number of provisions for ramping up e-consultations across the province. A working group is to be established to evaluate existing pilot programs and develop recommendations for a provincial business and technology model. Fee codes are also to be established for e-consultations, beginning with dermatology and ophthalmology, with the intention of expanding these to other specialties over time.

The expansion of e-consultation is promising. However, successful provincial roll-out of these systems will require significant resources, and given the state of the e-health file in Ontario, it may be some time until Ontario’s family doctors are regularly consulting their specialist colleagues over the internet.

No caps on utilization of services

Although the agreement reduces most physician fees by 0.5% or more, there is no overall or individual cap on physician services. If the parts of the agreement that focus on decreasing unnecessary tests are effective, overall spending may decrease. However, physicians who are paid fee for service may respond to the cut in payment by providing a greater number of services, in which case expenditure will increase more than the government hopes.

The devil is in the details

The tentative agreement between the government and the OMA attempts to address many of the major problems facing Ontario’s health care system. However, much of the most important work has been delegated to working groups. The history of working groups delivering on promises and being able to tackle tough issues in Ontario is mixed. Time will tell whether the agreement will deliver on its promises.

The post What does the government’s tentative agreement with doctors mean for Ontario’s health care system? appeared first on Healthy Debate.

The Question: I take warfarin for atrial fibrillation. Every three weeks, I go to a clinic to get my blood checked and, if needed, my warfarin dose is adjusted. Today, I woke up feeling ill with a runny nose, a fever and exhaustion. Should I stay home and wait until my next clinic appointment, come to the hospital or call the clinic?

The Answer: A cold or flu can increase the effect of your warfarin and may warrant an adjustment in the dose. The best thing to do is to call the clinic and describe your symptoms. Clinic staff may tell you to come to hospital and have a blood tested sooner than scheduled. Depending on the severity of your illness, the staff may also suggest the warfarin be changed.

“Although anticoagulants are life-saving, they’re potentially dangerous drugs given for dangerous diseases,” said Dr. Bill Geerts, a thrombosis specialist. “Over the age of 70, about 10 per cent of people have atrial fibrillation and most of these patients should be taking an anticoagulant.”

Not every patient who could benefit from the drug receives it. In fact, it requires so much monitoring and effort, that some patients are not given the option. Others are put on aspirin, even though, as Dr. Geerts points out, it is much less effective at preventing stroke in atrial fibrillation, a disorder of the heart’s electrical system.

Anticoagulants include heparin, low molecular weight heparin, warfarin and new oral anticoagulants dabigatran and rivaroxaban. There are two groups of patients typically prescribed them: those with atrial fibrillation and patients with deep vein thrombosis/pulmonary embolism – abnormal blood clots that develop in a leg vein or travel to the lung.

Anticoagulants should also be prescribed prophylactically to many surgical and medical patients in hospitals – but that isn’t always the case.

In fact, Dr. Geerts estimates more than 20,000 Canadians die each year after being struck down by these silent killers. [This rate is an extrapolation based on data from the United States].

“Clots are one of the commonest causes of death associated with hospitalization,” Dr. Geerts said in an interview.

Some institutions do audits on the use of drugs to prevent blood clots associated with hospitalization. At Sunnybrook, October figures show 91 per cent of inpatients received appropriate thrombosis prevention. According to Dr. Geerts, that figure represents an increase over the past few years.

Prevention of blood clots in hospitals is seen as such an important patient safety practice that Canadian hospitals are now required as part of their accreditation to take steps to provide patients with anticoagulants, audit how well they meet that objective and provide education to staff about complications.

When patients are prescribed warfarin, for example, they require a regular blood test every week to every four to six weeks. If they receive too much of the drug, they are at risk of bleeding, including a particularly devastating complication of bleeding into the brain. If they don’t receive enough, they are at increased risk for developing another blood clot or stroke.

The medication dose varies considerably by patient and by week. Weight does not necessarily affect the dose but genetic factors, diet, activities and other medications do.

“There are some patients in our clinic who take only half a milligram of warfarin a day, while others take 25 mg per day,” said Dr. Geerts. “To take warfarin safely, both the patient and the supervising health professional have to be obsessive about using it properly and monitoring it.”

Here is a link of anticoagulant clinics across the country for those patients wanting more information. They typically require a referral from a family physician.

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Why patients need to be vigilant about blood clots appeared first on Healthy Debate.

How much does Canada pay for generic drugs?

For several decades, the increasing use of prescription drugs has been a major driver of increasing health care expenditure in Canada. Recently the growth in prescription drug spending has slowed, due in part to the fact that patents of some of the most commonly prescribed drugs, like Lipitor, have expired. Once a drug’s patent expires, other companies develop generic versions of these drugs, which are sold at lower prices than the brand-name versions. With generic drugs making up a progressively larger share of the Canadian pharmaceutical marketplace, provincial governments have turned their attention to generic drug pricing as a way to control health care costs.

Over the past two decades, Ontario has taken a number of steps to reduce the price of generic drugs. In 1993, Ontario declared that generic drugs could be sold for no more than 75% of the price of the branded version. This price was lowered to 70% in 1998, and then to 50% in 2006. In 2010, Ontario went further and lowered the maximum price to 25% of the branded drug. Other provinces have followed Ontario’s lead and taken similar steps.

However, while Ontario’s prices are among the lowest in Canada, a number of other countries pay substantially less for generic drugs.  Many generic drug manufacturers are international corporations, who sell their products in multiple countries. Rather than sell their products for the same price everywhere, there is ample evidence that manufacturers adjust their prices based on a country’s policies and economy.

In an effort to try to get the same sort of deal other countries are getting, the Premier’s Health Care Innovation Working Group has recommended that the Canadian provinces and territories experiment with a competitive bidding process for generic drugs, known as “tendering”.  Under a tendering system, provinces would ask generic drug companies to compete against one another for the business of provincial drug plans.

Competition in Canada’s generic marketplace

According to a report from the Federal Competition Bureau, while Canada’s generic drug industry is currently competitive, generic manufacturers are competing for the business of pharmacies, rather than provincial drug plans.

In order to convince pharmacies to stock their own products rather than their competitors, generic manufacturers offer pharmacies significant discounts. These discounts obviously improve the pharmacies’ bottom line. However, a Competition Bureau report states, they “have typically not resulted in lower prices to consumers [or] to public and private drug plans.” This is because neither pharmacies nor manufacturers currently have any incentive to compete with one another for the business of provincial drug plans.  As a result, rebates offered to pharmacies are not passed along, so prices charged to drug plans tend to reflect the maximum allowed under provincial regulations.

At the same time, pegging generic drug prices to 25% of the price of the brand-name drug upon which they are based does not necessarily reflect the cost of producing a generic equivalent.  According to research by Aidan Hollis, a professor of economics at the University of Calgary, “there are many products with production costs either far below or far above 25% of the brand’s price.” As a result, “price will be excessive for many products, relative to cost,” he writes in a 2010 discussion paper on generic drug prices.

Benefits of tendering

“We’re leaving money on the table,” says Michael Law, an assistant professor at the University of British Columbia’s School of Population and Public Health. “Instead of leveraging competition to get better prices, we’re stuck on this old, arbitrary formula.” The bottom line, he says, “is that Canadians are paying too much for generic drugs.”

Law believes that tendering for generic drugs would drive the prices paid by provincial drug plans down, by making manufacturers compete for the business of drug plans, rather than the business of pharmacies.  “If you look at what public drugs plans in countries that use tendering – like the United States and New Zealand – are paying for generic drugs, they are a lot lower in nearly every case,” he says.  If Ontario were able to use tendering to achieve prices comparable to those in these other countries, Law estimates that that Ontario would save over $125 million a year.

Risks of tendering

While tendering would likely result in significant savings for provincial drug plans, at least in the short term, it is not without risks. These risks are laid out in detail by Aidan Hollis and Paul Grootendorst in a report paid for by the Canadian Generic Pharmaceutical Association. The report raises a number of risks, including concerns about possible drug shortages that can result when drugs are sole sourced, an issue Healthy Debate delved into earlier this year.

The biggest risk raised by this report is that tendering might remove the incentive for generic manufacturers to challenge patents on brand name drugs.

In Canada, patent protection on the active molecule in a new drug lasts for 20 years.  When the patent expires, competitors may legally bring generic drugs based on that molecule to market.  However, Canadian intellectual property law allows companies to file multiple patents on different parts of a product.  For example, in addition to patenting the molecule that is the active ingredient in a drug, companies may also file patents on different elements of the manufacturing process and particular formulations of the drug.  Moreover, these patents may be filed at any point, so drug companies often file them in order to extend patent protection for their drug beyond 20 years.  According to Hollis and Grootendorst, in Canada these additional patents sometimes number in the hundreds for a single drug.

If a manufacturer wishes to bring a generic version of a drug to market, Canadian regulations require them to resolve any and all remaining patents before the drug is approved by Health Canada. This means the generic manufacturer must engage in a lengthy and risky legal process to prove that their drug either does not violate the additional patents (e.g., because it uses a different manufacturing process) or because the patents are invalid (e.g., because they were for processes that were “obvious” under Canadian law).

Hollis and Grootendorst worry that under a tendering system, the incentive to challenge patents would be removed, because they believe there would be no guarantee that the company who successfully challenges the patents would be the same company who wins the tendering contract.  Especially since the company who has challenged the patents in court will need to recover their legal costs by charging a higher price, which will make them unlikely to win a tendering contract against companies who can charge a lower price.

This is a serious risk, because if no generic companies were to challenge patents, public drug plans would be forced to keep buying brand name drugs, which are four times more expensive than generics.  This could quickly wipe out any savings from tendering.

Managing the risks of tendering

Law agrees that there must be incentives for generic companies to challenge patents, but argues that these incentives are entirely compatible with tendering. “Generic drug pricing is more competitive in the United States,” he says, “their approach is to give the generic company who challenges a patent six months of exclusivity.” Six months with no competition allows generic companies to make a significant profit, while also allowing them to develop efficiencies in their manufacturing that may help them when it comes time to bid on a tendered contract.

Another approach would be for the provinces to require generic manufacturers to pay royalties to whichever company successfully challenged a patent.  This would ensure that even if the company who challenged a patent did not win the tender, they would still benefit financially from paving the way for others.

The simplest way to manage this risk is probably for the government to wait for a period of time after the first generic enters the market before issuing a tender. Hollis agrees, explaining in an interview with Healthy Debate that “definitely if you delay [the tender] for a while, to allow the challenging generic to earn some money, then it clearly reduces the problem of whether there’s enough incentive for the generics to enter at all. That’s fairly straightforward.” He cautions, however, that “this delay should probably be for several years… the benefits from being first play out over quite a long period.  If the period is too short, you hurt the incentive.”

Looking ahead

Governments are understandably eager to reduce the price of generic drugs. Tendering is an appealing way to do this but is not entirely without risk. In addition to the risks associated with removing the incentive to challenge patents, public drug plans may also become overly reliant on single suppliers. If the provinces do purse a policy of tendering generic contracts, they need to take steps to manage these risks.

The post Can Canada pay less for generic drugs? appeared first on Healthy Debate.

The Question: I want to do dialysis at home but am worried. Is it safe? Is it possible?

The Answer: This is the kind of question Alireza Zahirieh, head of home hemodialysis at Sunnybrook, encounters all the time from patients. The vast majority of them are waiting for kidney transplants – some up to a decade. In the interim, they face coming to hospital for at least four hours a day, three days a week, until they receive a new organ.

“Virtually every patient is a candidate for hemodialysis,” Dr. Zahirieh, staff nephrologist said in an interview. “When we see someone who is starting (this form) of life support, we try to get them as much education as possible.”

With hemodialysis, a machine and special filter are used to clean the blood. To draw the blood, a doctor either inserts a special intravenous catheter in a large vein, usually in the neck or surgically connects a vein to an artery to create what is known as a fistula, which can be needled or accessed during each dialysis session. The blood is withdrawn from the body and then passed through a dialyzer, an artificial kidney.

Of the 39,352 people across Canada living with end-stage renal disease, 23,188 were on dialysis and 16,164 were living with a functioning kidney transplant, according to 2010 figures from the Canadian Organ Replacement Register, the latest available.

“For someone to do hemodialysis at home, they have to be able to set up the machine, they have to be able to connect themselves to the machine,” said Dr. Zahirieh. “It may involve putting two needles in their fistula, finding the right spot and making sure the blood is flowing. On the machine, they have to know how to take the right amount of fluid out of their body.”

In addition, they also need to monitor their treatment and then be able to do everything in reverse.

The bulk of patients with end stage renal failure are those with diabetes and renal vascular disease.

Usually, patients are put on dialysis when their kidney function is less than 10 per cent of an average 20-year-old. Symptoms are slow to develop and include nausea, loss of appetite, weight loss, itching, swelling and high blood pressure.

There are several hemodialysis options at home. In broad terms, dialysis can either be done during the day or done at night, while a patient is asleep. Most patients either choose to do intermittent hemodialysis, which is done every other day or nocturnal hemodialysis, which takes place overnight, four to six nights a week. By comparison, patients who receive their treatments in hospital typically spend four hours on the machine three days a week.

“The typical [home dialysis] patient is younger and healthier than the average patient in our unit,” he said, noting that patients doing home dialysis range from their 30s to their 70s.

Either way, it is significant investments in time and patients have to be motivated to undergo the six to eight weeks of training. Patients have to be able to insert needles, properly clean equipment and use the machines, noted Dr. Zahirieh, Assistant Professor of Medicine at the University of Toronto.

“In comparison to the alternative form of home based dialysis [peritoneal dialysis] hemodialysis takes a lot of training, involves a lot of monitoring and is the most involved form of dialysis,” he said.

“This can really limit the number of people who choose to do it. However, I believe it offers a number of unique benefits. It can dramatically reduce and even eliminate some dietary constraints, improve fertility, lead to improvements in heart health and possibly overall health as compared to other forms of dialysis.”

Lisa Priest is Sunnybrook’s Manager of Community Engagement & Patient Navigation. Her blog Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts.  Her blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre.  Send questions to AskLisa@sunnybrook.ca.

The post Home dialysis and the lengthy wait for a kidney transplant appeared first on Healthy Debate.