Opinion

Are Health Links targeting the right patients?

One of the priorities of the Ontario government is to develop strategies to reduce the disproportionate amount of health system use, and in particular of acute hospital care, by small sub-groups of people, such as seniors, those with complex chronic health issues or people whose health is complicated by mental health or substance use issues. The recent creation of nineteen “Health Links” in communities across Ontario is supposed to encourage increased coordination of care and personalization of care plans. Explicit goals include reducing the number of avoidable emergency room visits and the number of readmissions soon after discharge for these groups of people, as well as improving the experience had by the patient as they “journey through” the health care system.

In December 2012 Ontario Health Minister Deb Matthews declared that “Health Links will break down barriers for Ontarians, making access to health care easier and less complicated. By encouraging local health providers to work together to co-ordinate care for individual patients, we’re ensuring our most vulnerable patients – seniors and those with complex conditions – get the care they need and don’t fall between the cracks”.

As the Health Links strategies roll out across the province, representatives from across the health care spectrum, including hospitals, home care, primary care, mental health and rehabilitative care, are being brought together to brainstorm how  to improve care for vulnerable patients who use emergency rooms frequently.  Recently I attended a Health Links workshop to brainstorm how hospital based care could be improved through a variety of strategies, including one of health care’s latest, greatest attractions: “Experience Based Design.” Popularized in the United Kingdom’s National Health Service, it appears to be based on the idea that health systems can be improved based on learning from the experience of patients – which sounds reasonable and perhaps even wise. It aims to determine not only “were you satisfied?” with your care but also “what were you feeling?” during various experiences in health care institutions. Such feedback is generally achieved through phone or mail invitations to participate in focus groups where people are asked about their experiences following an encounter  such as an admission to the institution.

I’m not sure if it was just me or if anyone else was experiencing a sense of the surreal when a facilitator told the story of her loved one’s admission to hospital. She reported that she and her family felt afraid to ask questions, perplexed by decisions made regarding the patient’s care and terrified that their family member was going to die. To a nurse like me, it sounded perfectly typical. But when she articulated these emotions, hospital staff seemed to have experienced an epiphany of sorts. Apparently, prior to these revelations, no one understood that patients and families had feelings during hospitalizations for life threatening conditions.

As a nurse, my first reaction was to wait for the good part – like, the solution may be to increase nurse to patient ratios so that nurses have time to attend to their patients’ emotional needs like we were taught is the essence of our profession.  But the good part never came. This was the good part.

Seriously – who were these people? Had anyone spent any time in the health care system? Were any of them nurses?  In fact, most of the people in the room were not direct health care providers but rather managers and bureaucrats. For me, the workshop was a grueling exercise which made me feel incredulous that we were actually spending time on this stuff, and angry that the people in charge of the health care system were really that clueless.

But while I suppose it is good that the Ontario health care system’s leaders have figured out that patients have feelings, I cannot help but think as well that this is rather beside the point. Who exactly is making use of hospitals disproportionately? Are these the people who are attending focus groups? Probably not. If we’ve learned anything from decades of research into the social determinants of health, it’s that many of our sickest patients are among the most marginalized in our society. Are we holding focus groups to ask them what is missing in the community to support them and prevent the revolving door syndrome?

As a health care provider who has been situated in community based primary care for most of the last twenty five years I can tell you that the most frequent users of the health care system are often people who are marginalized by their homelessness, poverty, mental health issues or substance use. For these patients, entering any health care system can feel frightening and humiliating. Here is how I imagine an ”experience based design” focus group of poor people might go:

“When you handed me a prescription I had no way to fill, I felt skeptical that I would get better.”

 “When you suggested referring me to home care, I felt curious to know if they would come to visit me on the park bench I sleep on.”

“When you told me to take this medication three times daily with meals, I felt ashamed to tell you I can only afford to eat once a day.”

Come on, people. There are serious problems with the health care system, yes. But having ridiculous discussions which ask the wrong questions of the wrong people will not help us fix them.

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18 Comments
  • Janet Fathers says:

    Wow! So true! I’ll second that–CUT the beaureaucrats making decisions & being paid big bucks for doing so, & put that $ into just like you said, increased nurse: patient ratios–whether in community, hospitals or LTC.
    Well written article! I have often been at focus groups & been frustrated with the content–thinking,”Where have you been, I could have told you that! Is this a make-work project?!! Ask the ground roots care-givers–are you serious?!” & thought maybe I’ve just been around too long, -getting jaded. But it’s not the patients I get frustrated with–it’s these new initiatives, etc from MOH–time consuming ++ & taking away from client care! Yes, it provides them their stats–& I get that some of this is necessary for planning–but it’s always so overboard! Well articulated!
    I just read a good quote: “For every efficient, productive force there is an equal & opposite government program”

  • Dr. H. Jane Storrie, PhD, C.Psych, ABDA says:

    As one of the goals of Health Links is to reduce the number of avoidable emergency room visits and hospital readmissions, we need to take a close look at how Ontario is managing mental health. There is a significant shortage of psychiatrists, and family physicians are being forced to assume responsibility for over 80% of patients requiring assessment and treatment of psychoemotional and behavioural impairment. Family physicians may have little training in this area, and they are frustrated by their inability to secure timely access to psychiatric services for their patients. In addition, there remains a significant number of Ontarians who do not have a family physician, and they often seek services through the hospital system. Patients who a discharged from inpatient psychiatric care are still unable to access psychiatry in the community, and have no choice but to return to the hospital.

    There are some 5000 psychologists practicing in Ontario who could be integral to the success of Health Links. Psychologists have the most education and training in the assessment and treatment of mental illness of all healthcare providers. By inserting psychologists into the system, timely access to specialized services would be significantly improved. Expanding diagnostic, assessment and treatment services in the community would reduce reliance on local hospitals, and ensure that patients discharged from psychiatric inpatient units have the care they need to avoid re-hospitalizations.

    In addition to operating throughout the province in private practice, creating more opportunities for psychologists to join Family Health Teams (FHTs) and Community Health Centres (CHCs) would ensure Ontarians receive timely, appropriate, and effective intervention for both physical and mental health concerns.

    The current system will not allow Health Links to achieve its goals. It’s time to let psychologists in.

  • M. Janet Kasperski says:

    There are “high resource” patients who can be better managed in the community if high levels of skilled nursing and medical care and the right mix of other services are available. Unfortunately, when we view the world through the eyes of how much money patients are costing the system, we miss the opportunity to provide the services that our most vulnerable citizens need and deserve. Health Links are discovering that a high percentage of the “high resource” patients have severe persistent mental disorders; however, the services for them are uncoordinated and require many different sectors in the community to pull together – not just those funded by the Minister of Health and Long Term Care. Health Links also need to move quickly to better serve “high need” patient populations – those who use few resources because the system does not provide the care they need – infant, children and adolescents with developmental and behavioral problems or mental illnesses and addictions and their family members. Our youngest and most vulnerable patients and their parents and siblings deserved to be top priorities for the Health Links since, in the near future, they will be utilizing 1 to 5 % of government resources (not just healthcare dollars) if their needs are not met when they are at an age when treatment will be most successful. Health Links needs to invest in the social and psychological needs of “high resource” patients and needs to develop a strategy to meet the requirement of “high need” patients. As the article points out, healthcare leaders tend to voice a commitment to “patient-centred care” but if their personal and educational experiences are anchored in a “bean-cutter” approach to care, they will never begin to understand how to implement change that leads to the care that all Ontarians, especially our most vulnerable citizens need and deserve.

  • Jacquie Snoek says:

    Thank you Kathy for articulating so clearly how our tax $ are wasted with these discussions…constantly reinventing the wheel but leaving the same holes.

  • anne egger says:

    To the point Kathy Hardill, nurse practitioner extraordinaire! Yes , who are they kidding?, who are you addressing and perhaps the point of this painful exercise would be to build on the responses and work it into the reforms. No , just a place to vent your feelings. No, once again, not good enough. %featured%Ontario’s health care system leaders are missing the point once again!%featured%

    anne egger, RNEC

  • Barb says:

    Thanks for mentioning Experience Based Co-design. As a patient advocate, I think this is a fabulous idea.

    Here are some links:

    1. Kings Fund, Experience Based Co-design Tool Kit:
    http://www.kingsfund.org.uk/projects/ebcd

    2. Video explaining EBC including great interviews with staff, admin and patients. By Prof Glenn Robert.
    http://www.youtube.com/watch?v=OXG0G1LrK3I

    • kathy hardill says:

      thanks for your comments barb – i agree, in theory, evidence based design sounds great, and for some people may work well – my points were really about how unlikely vulnerable, marginalized people who may have high use of hospital based care might be to actually have their experiences heard (because invitations to focus groups tend to rely on telephone or mail contact, which homeless people for example may not have) and because perhaps the root causes of this high use of hospital care is less about their experiences within the institution, and more about gaps or contributing factors external to the institution (such as having no drug coverage for example) – the concept itself may be sound, but its implementation in this context may be flawed!

  • Shirlee O'Connor RN(EC), NP-PHC says:

    Your insights are so very accurate. It is scary to think, that once again decisions about health care are being made by those who seem oblivious to the problems. Besides, listening to the patients, listening to the front line workers , i.e. nurses who make up the majority of hospital personnel, would be another good approach. However, all the surveys in the world are useless if there is no action taken on the findings!

    • kathy hardill says:

      thanks shirlee – for sure, i agree with listening to nurses! but you are also correct, meaningful action (not the chattering classes talking to each other in windowless rooms filled with flip charts!) is what is needed – i think the challenge is getting the right people together to ask the right questions – it doesn’t matter how wonderful a hammer you have if the problem is not, in fact, a nail!

  • A FAMILY MEMBER says:

    After having had an elderly parent admitted to hospital after an accident, my eyes were really opened as to the care seniors (and their families) receive from the nursing staff. As stated in your article, the bureaucrats have NO IDEA what happens in their hospitals, but I also noticed something about the nurses. My parent (as a result of the accident and subsequent surgery) had lost most of their mental facilities and was very confused. I found that the young, newly graduated nurses were caring and compassionate to both the patient AND family while most of the older nurses seemed to have lost all of those feelings, making the family feel that our loved one was just an annoyance to them. My parent passed away after about a month. Since then, our other parent has been hospitalized numerous times (with all mental faculties intact). The treatment of this parent and our family was completely different. We and our parent were treated with respect and caring and, most importantly, dignity. Just because an elderly patient is not of sound mind does not mean that they (and their family) should be treated without dignity and respect. In the case of our first parent, we already felt that we had to be there 24 hrs a day (and one of us always was) to give the nurses assistance, and to be treated the way my parent was is just totally unacceptable. I think that, God forbid, some day these nurses might find themselves in the position our family was in, and their treatment of mentally challenged seniors may change.

    • kathy hardill says:

      how awful for you and your family – i have seen what you describe, and it’s just a dreadful thing – while i think that people in human services work can be vulnerable to being burned out over time, particularly after years of working understaffed, the solutions need to be systemic and structural, such as better nurse/patient staffing ratios – but when people in your family’s circumstances experience this, it’s a terrible thing

      • A FAMILY MEMBER says:

        %featured%Thank you for your understanding and validation. Any time we mention our bad experiences, people seem to think we are somehow making this up!%featured%

      • A FAMILY MEMBER says:

        Kathy, I also agree that burnout due to understaffing IS taking a great toll on our nurses and they should never have been put in this position.

  • Nurse Jenny says:

    I agree but this is the first concrete initiative that might actually achieve positive outcomes for patients in a short period of time.
    The clueless bureaucrats unfortunately will always exist…

  • Andrew Holt says:

    Hello Kathy
    Thank you for articulating this fundamental challenge for us as a community, society and health system.

    What steps can we take to better align a portion of the efforts and resources of societies advantaged to ensure a basic level of housing, food, health and social services for all – in day to day practical terms? What other societies are best able to ensure their marginalized and most vulnerable individuals are included in a humane, productive and compassionate way in the overall wealth of our country, province, region, town, neighbourhood …? Is our individual and collective response to this universal challenge one of the core defining characteristics of each country, province, region, town and neighbourhood …?

    • kathy hardill says:

      thanks for your comments andrew – more equitable distribution of wealth is ultimately the solution, you are correct – a great start would be ensuring that everyone has a guaranteed annual income, the results of which we have seen in jurisdictions such as Dauphin, Manitoba in the 1970s – http://healthcaretransformation.ca/sdoh-how-an-income-supplement-made-a-town-healthier/ – if interested – i would agree that how we treat everyone is a measure of our justness – but from even the most pragmatic bottom line perspective, this would save health system dollars

      in terms of the health care system and reducing use, paying attention to what vulnerable or marginalized people need in their communities, including and especially, but not limited to adequate income – but other things such as home care services that work flexibly enough to serve people without safe or traditional housing, or without telephones, or across the board drug benefit coverage, etc, to name a few

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Kathy Hardill

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Kathy Hardill is a Primary Care Nurse Practitioner at a clinic which includes patients whose health is made vulnerable through homelessness, poverty and other risk factors.

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