In recent years, more and more patients around the world are logging into their health records online—but few Canadians have access to this service. Patients can log into a secure online portal and see lab reports, doctors’ notes, imaging results, vaccination and allergy information, and more. Proponents believe the access will lead to better patient care and empowerment. Patients can understand more about their condition and medical history, and they can correct information that’s inaccurate.
Generally, the way patient health records work is information on a patient’s electronic medical record (EMR) is copied over to a patient-facing, online version of that record, called a patient health record. All patients in Sweden and Finland can access their health records online, and in many other countries patient-accessible medical records are available to a limited degree.
Currently, only a small percentage of Canadians have online access to their medical records and these records are incomplete. That’s because in many cases, patient health records are being adopted by individual institutions. So patients might only be able to access information about medical care that took place at a specific centre.
In Nova Scotia, around 25 percent of family physicians have signed on to MyHealthNS, a patient health record launched by the provincial government in 2012 that allows patients to see their medication list, specialist reports, lab tests, diagnostic imaging results and more.
In Ontario, LifeLabs now allows all Ontarians who get testing done in their clinics to access the results online. And 19 hospitals are currently using MyChart, a patient health record developed by Sunnybrook in 2006. In addition, all hospitals in southwest Ontario are in the process of adopting MyChart, according to Sarina Cheng, director of MyChart at Sunnybrook. Last month, Sick Kids launched its own version of a patient health record, starting with four of the hospital’s clinics.
Alberta, meanwhile, is developing Connect Care, which will allow everyone in the province to access lab reports, prescription records and other medical information online. The government expects it to be fully operational in five years.
Does access to online health records improve patient safety?
Online patient health records are relatively new, and a review of 45 studies found “insufficient” evidence that patient health records improve health outcomes. But patient health records are new, and improvements that result from being able to access medical data could only become evident by studying very large populations over many years.
Whether or not it improves their health, patients appreciate having easy access to their medical records. Reviews have found that patient health records improve patient-provider communication and increase patient satisfaction. When MyHealthNS evaluated the initial pilot of its patient health record, involving 30 doctors and 6,000 patients, 98 percent said they wanted to continue getting results online, and 85 percent said it made a positive difference in their health management, says Stewart Cameron, a family doctor in Halifax who is an adviser to Nova Scotia’s provincial health department on the MyHealthNS patient health record.
Proponents of patient health records think patient access to records will have many other benefits. For one, their adoption could lead to more up-to-date and accurate records. Patient health records allow for a second set of eyes on the medical information—the patient’s. As the person who has the most at stake to see their records, a patient might notice mistakes or omissions. In some cases, patients can also add information. At Sick Kids Hospital, for example, patients and parents who use the patient health record “can input their allergies and the medications they’re taking.” Providers are then sent these additions so they can update the master record, where appropriate.
In one small study of the implementation of a patient health record, medication lists were frequently flagged as inaccurate by patients in a medical feedback form. (Inaccuracies included medications listed that had been discontinued and dosages different to what patients were taking). However, only 30 percent of patients sent in an electronic medical feedback form.
Patient health records might also reduce serious medical error, though this hasn’t been studied. In rare cases, doctors fail to properly inform patients of critical test results, and this can lead to serious harm and even death. According to the CMPA there were more than 500 cases, over a five-year period, involving one or more breakdowns in the follow-up of a critical test result. Cameron in Halifax hopes that widespread adoption of patient health records would reduce the number of critical test results that don’t get communicated to the patient.
Cameron has seen first-hand how patient health records can reduce documentation errors. He once received a consultation report from a surgeon that said the patient had an assessment and a colonoscopy. When the patient saw the report on his patient health record, he told Cameron “that’s not actually what happened.” So Cameron contacted the surgeon. Turns out, he had dictated the information on the wrong person. Though preventable and rare, such errors do occur.
Finally, access to their own medical data also allows patients to be more involved in their care, and that can lead to improved testing and treatment decisions, according to Charles Harper, executive dean of practice at the Mayo Clinic, and a neurologist in Rochester, Minnesota. Harper is currently overseeing improvements to Mayo Clinic’s patient health record, which is available to all of the organization’s patients—1.25 million have registered since it was launched in 2009.
In Harper’s experience, patients who access their health records online have more informed questions and ideas for next steps when they see him in the office. They’ve had time to access their test results before the appointment, and do their own research about what those results mean. “It makes that [clinic visit] time much more valuable,” he says. “It creates much more of a partnership.”
Cheng has also seen patients become more empowered due to the patient health record, with many users logging in multiple times a month. “Patients are giving other physicians access [to their patient health record] and getting second opinions,” says Cheng.
Cheng adds that the patient health records help providers educate patients on how to improve their health. “We can push out information to one person or 1,000 people or only people that are dealing with certain conditions,” she says. That could include reminders about breast cancer screening or information on a new diabetes management tool.
Why aren’t online medical records more widespread in Canada?
While the technology to make it easy for doctors to share medical records online has been around for decades, the adoption of patient health records has been slow in Canada. Cost is one of the biggest reasons, says Sacha Bhatia, director of the Institute for Health System Solutions and Virtual Care at Women’s College Hospital in Toronto. “For a lot of hospitals or physician’s offices where resources are scarce, the question is, ‘Is this the best use of the resources that we have… especially if there’s not a huge number of people who will use it.’” According to Bhatia, around 20 percent of patients at Women’s College have signed up to the hospital’s patient health record, which was launched in late 2016.
Patients might not be signing up in droves yet because patient health records are new and it takes time for word to spread that they exist, and for patients to see the benefits, just as it has taken years for people to adopt online shopping and online banking in large numbers, explains Michel Chiasson, a family doctor in Chetticamp, Nova Scotia, and early adopter of MyHealth NS.
Another reason for low uptake is the patient health records might be limited to the care provided by a single institution. For patients to be able to access their complete records, all care-providing institutions need to be using patient health records, ideally ones that don’t require separate log-ins by the patient. “If patients have to log into three different portals, that becomes confusing,” Bhatia explains. It’s up to the Ontario government to provide the regulatory framework so that existing patient health records can be better integrated, he adds. (Currently in Ontario, only MyChart allows health records from multiple institutions to be uploaded into the patient’s health record.)
Then there is hesitation on the part of providers. Doctors are worried that patients might take offence to clinical notes that are meant to share information about a patient’s clinical state from one provider to another. This concern is especially at the forefront for notes regarding patients with mental health issues and addiction, says Anne Trafford, chief information officer at St. Michael’s Hospital. Chiasson says, “Sometimes the wording of doctors can be blunt,” but he still thinks that patients should be able to access clinical notes, even though MyHealthNS doesn’t share family doctors’ notes to the patient health record. “Specialists and family doctors are going to have to be more mindful of how we write things,” he says.
Finally, surveys reveal provider concern that patients will misunderstand their lab reports, leading to confusion and anxiety. So far, studies haven’t shown this to be the case. One study by Kaiser Permanente found that patients were more than three times more likely to feel calm and satisfied rather than confused or worried after seeing test results online, and prior discussions from doctors about what to expect led to improved patient reactions. As Chiasson says, “A lot of doctors are very worried that patients are going to be messaging about every little blood test, and patients don’t do that.” That said, patients who are early users of online health records may be more health literate compared to groups who choose not to register.
Are there concerns with patients accessing online medical records?
One of the biggest questions for institutions adopting patient health records is when critical lab results should be released. Many tests, like pregnancy or cholesterol-level tests, can be released to the patient at the same time they’re sent to the doctor. But other test results shouldn’t be released right away. No one wants a patient to have to absorb a result like a positive HIV test or cancer diagnosis alone, in front of a screen.
At the Mayo clinic, doctors are called about highly serious, abnormal test results. In the next two days, the providers notify the patient about the results over the phone or in person, before they’re uploaded to the patient health record, Harper explains.
Sick Kids is taking a more conservative approach, holding results for five days and longer in some cases, so that doctors have time to walk parents through abnormal results first. Sarah Muttitt, chief information officer for Sick Kids, says that in the future, the hospital would like to be able to provide information alongside lab results that helps parents and children understand what the tests mean.
The other major consideration is who gets access to patient online records. How long should parents be able to access their children’s records? And should adult children be able to access their parents’ records?
At Sick Kids, there’s no clear cut-off age in which children manage their patient health record by themselves. “For patients who are 12 years and older who we feel have the right maturity, they can absolutely have their own account,” says Muttitt. “For kids less than 12 or who do not appear to have that maturity or have learning disabilities, those patients and their parents can both have access.”
At St. Michael’s and St. Joseph’s Hospital in Toronto, which adopted Sunnybrook’s MyChart this year, hospital leadership decided not to put pediatric patient records online. They may do so in the future, once legal consent issues are appropriately considered, says Trafford. “There was concern that the parent wouldn’t necessarily be aware that they need to discuss ongoing access,” she says, adding that clinicians were worried children might hold back information around gender identity or sexual activity if they knew their parents could access their medical information.
What is certain is that electronic access to one’s medial record is “a train that’s left the station,” as Chiasson puts it. We can expect that patient health records will only become more widespread and sophisticated. “There’s a fundamental question of who owns the data, and the truth is, we as providers don’t own the data, it’s the patients that own the data,” says Bhatia.
Correction: This story has been updated to indicate that the Mayo Clinic at which Charles Harper is executive dean of practice is in Rochester, Minnesota, not Rochester, New York.
The comments section is closed.
I am tired of having to pay for every record of my healthcare. OHIP has covered the fee to have the procedure done. The records are not available to all health care professionals including hospitals. The record should at the very least be in my hands to distribute to my other care professionals as I see them.
Great, thorough article. Thank you for creating it.
From my own perspective in dealing with lots of doctors volunteering for better health outcomes that seems to get widely discredited is the need for patient access. It is not widely adopted because the amount of application features are comparative to a early 2000’s app. I use MyChart at least 3 times a month. I end up needing to create my own data based on those reports in a spreadsheet.
It would be nice if you could right an article comparing different health care applications within Canada.
I travel the world extensively. I feel it is important that I have a complete record of my medical history with me at all times. Having moved from the UK to Canada a number of years ago, I provided this record to each doctor as I moved about in Canada. I cannot however get a consolidated record of all my medical treatment, imaging and other records since I’ve been here. I am on 4 different portals, each of which charges me for access to MY DATA. This system is just a money grab, and Health-Canada, in the 21st Century should have something in place that ensures the health records of all of us are centralised, secure and accessible, not fragmented across a multitude of profiteering businesses that hold OUR DATA Hostage.
It is up to me to ensure that the record is secured and accurate, as it is MY RECORD. It should be Health-Canada’s responsibility to ensure I have access to what is added to that record while in Canada!!
Another problem for those travelling internationally is that many medical portals block ip address from abroad for fear of hackers, seized medical info, and ransoms.
Health records should be available to me whenever I want them—the reason is it is my record and my health and I should have complete access. I had a doctor for a few months this past year WHO DESTROYED all my original health records–without my knowledge. When I worked in hospitals this was illegal! Has this rule changed? This doctor is an immigrant who does not understand English well. As a result of the Poor health care I received from her I had to fire her. I have several health problems but she was too afraid to see me in person because of COVID. Even after I was hospitalized she would not see me. How are so called “doctors” like this allowed to practice in this country? Why do we have few few Canadian born doctors?
I am sorry to hear that.
Search for your doctors license here.
https://doctors.cpso.on.ca/
You can complain about the doctor in Ontario here.
https://www.cpso.on.ca/Public/Services/Complaints
I hope you get this update.
Hi, I want to subscribe for this Hebergement Web site to take latest
updates, therefore where can i do it please assist.
I have had diabetes for 23 years and want to apply for tax releif but cannot access my medical records from various doctors and clinics where I was living over the years.Why is this info not available?
I object to having my results being held hostage until I pay a fee, up until now it has been free on my hospital portal
I never heard of this or gave permission to have anyone control my med records other than my Hospital . Basically this is extortion
Request:
Answer these questions:
1/ Am I able to access my medical records – here?
2/ What information do I need in addition to my Ontario Health Card?
3/ If I can access my health records: Where do I get the step by step directions as to how to do so?
4/ If there are restrictions on accessing my health files and there is then are the restrictions?
5/ If I am permitted to view ‘my records’ how do I proceed expeditiously?
Request: My guess is that I’m not able to access my records. If this is the case then state that up front in BIG Letters. If we’re not able to access our files then state why?
I moved from Alberta to Halifax. The hospital in Alberta took over 2 months to send my medical records to my family doctor.
It is not to any medical facility or health provider interest to transcribe in wording the findings in blood, imaging, examinations to explain to the patient the “medical findings”.
The doctor will not sit at the keyboard after the patient leaves their office, after consultation/evaluation and prescribing meds; add to patient historical database.
They will not voice dictate their findings, for the office support personnel to enter concise evaluation to the patient’s database.
This would be true of family doctors, emergency facilities, or health specialists.
I paid X$ to my family doctor for copies of my historical visits and tests prescribed.
Nowhere did I extracted any bits/clues of information, as to the health provider findings in the level of my health.
The blood tests are very generic as what the check sheet provided by the health provider, ask to be tested.
It is returned by test lab itemizing/analyzing the various components/minerals/other critical elements.
They are tabulated in actual reading and how they compare to acceptable high/low levels.
I do not recall seeing in the family physician’s which I paidX$, review of blood tests and finding consultations to me.
I do recall on my next appointment asking as to the findings, and being informed “there are no concerns”.
To have a use-full/informative patient database it needs to “full circle”. Doctor visit/examination, Doctor’s findings/medicine prescription, Lab tests/imaging required, specialists referral. Confer with patient with findings/Enter findings in patient’s historical database .
This would include any abnormalities found in doctor office visits, blood tests, radiologist imaging analysis, specialist recommendations.
Having thought about the above comments and “my 2 finger entry”…..time approx. 30- 45 mins.
My guess is that medical provider are not willing to take the time to provide patients with “informative analysis/recommendation, with accessible patient database.
As my Experiences:
1st physical with new family doctor:
After a echocardiogram, opinion of the doctor I have an enlarged heart, with no recommendations.
Was referred to a cardiologist, and put thru their full test parameters, including the stress test.
There were no concerns/required medication/lifestyle/nutritional changes presented by the cardiologist or further visit with the family physician.
2nd physical with same family doctor:
After an EKG opinion of the doctor “reading showed a high heart rate”, with no recommendations.
Was referred to a cardiologist, and put thru their full test parameters, including the stress test.
There were no concerns/required medication/lifestyle/nutritional changes presented by the cardiologist or further visit with the family physician.
3rd A visit with same family doctor indicating that I had experienced some abdominal/lower rib cage pains:
They were not continual, only short, sudden , and short duration.
The family doctor’s opinion was these were signs of an acid reflux occurrence, with a prescribed medication given.
An EKG was preformed by family Dr.’s office personnel ” not sure if the person had RN credentials”.
In family doctor consultation was informed that I had experienced a mild heart attack.
Was referred to same previous cardiologist, and put thru their full test parameters, including the stress test.
There were no concerns/required medication/lifestyle/nutritional changes presented by the cardiologist or further visit with the family physician.
Upon next family Dr. visit I enquired as to him diagnosing me having a silent heart attack by the the EKG graphing, were the cardiologist opinion was “unconcern”.
His reply being “the specialist is correct”.
4th Visit Family doctor was tested for blood pressure:
Family doctor indicated that the values showed high blood pressure concerns.
There were no instructions to relax for a moment, we need to take a second “comparison test”, which is correct medical protocol.
Jotting values on a post-it would have been valuable for me to mull and evaluate comparisons to acceptable levels.
The above simple sharing would be the very basic of keeping the patient informed of their “health status/concerns/warnings/recommendation/grades”. The beginning of the “Patient’s Informative Health Record”report card.
This time referred to different cardiologist, and put thru their full test parameters, including the stress test.
There were no concerns/required medication/lifestyle/nutritional changes presented by the cardiologist or further visit with the family physician.
It is very apparent that there is very little interest to be more mind-full as to what diagnosis is presented to patients, being prudent to hold off on “Dire opinions” and leave it to the specialists to render an expert medical finding.
Spewing continual “heart warnings” to patients can only have negative results, were original diagnosis is “overturned”.
My family came to Canada in 1959, my parents were in their middle 40’s having endured a “major crisis” in their life living thru the ravages of WWII, pulling up roots coming to Canada, not knowing the language, having to work in the fields for menial wages.
They endured “as their age/strength/courage/will power ” were still resilient.
They achieved home ownership, few trips abroad to their homeland/relatives, children married, bringing grandchildren and great-grandchildren.
And upon their golden years/and their passing on “Dad being 89 2004, and Mom being 92 2009”.
My experience witnessed/was part of the best of the medical/health support, when they were at their weakest stage most dependent on the “Health System”.
It is not about how many patient visitations/billing charges can be handled per hour.
This is not only a criticism of the family doctors, but including every one from the Premier of Ontario, the Minister of Health the Ministry of Health and Long Term Health Care, Health Care Connect. All the Ontario LHIN’s bureaucrats.
At first blush with all the above “I should feel reassured of having a full umbrella specifically acronymed health control Centres looking after/supporting my health needs.
Having lost my family Dr.
So far I have learned:
-The Premier of Ont. has proposed the collapsing of the LHIN’s .
-my city has not had a family Dr. accepting new patients in 4 years.
My assigned care Connector from Health Care Connect indicated that:
-There was a family doctor within my area and 3/4 of an hour drive from my residence’ and they have received 700 applications, and will set up interview within 2 months
-There three walk in clinics that have no “in-house” doctors available, only “Skype linked ” physicians to consult/support.
They can schedule blood testing, imaging , specialists.
Questions that I have inquired of various heath support personnel have been:
I have no family doctor, how do I get an extensive physical? with no immediate/positive answer.
If there has been no family doctors accepting patients in the last 4 years, what is the time frame anticipating resolution of this ongoing problem. Are we looking at 1,3,5…..year plans? Most answers have been a very sympathetic “I am sorry I don’t know I don’t have a family physician of my own”.
I do not have that “warm fuzzy” feeling of that above umbrella looking after my health needs.
When someone has come to expect his lifelong contributing taxes would be used prudently by the “governing machine”, Then the least to be expected is having continual access to a family physician.
What we are forgetting here is that rate of “numbers of doctors accepting new patients ” need to occur at a greater pace than “doctors retiring or leaving a specific poorly health supported area, namely my city.
Upon closing it simply is a system “People helping people in need”, with the Joy it flow thru one.
I realize that this comment area has a very specific topic, and my opinions may be rambling that I need to vent.
I have retained a copy of this transcript and will forward to various ministries, heath/governing official news media.
Hopefully I have found just a “bump in the road”, that will be resolved eventually and to look back with the saying “Don’t Worry be Happy”
I have been registered in Nova Scotia @ MY HEALTH NS for several years, but, still have no access to my records. Not all Doctors are registering or participating. Why is there not one registry for ALL Nova Scotia health records and allow us to have access to our records. Not everyone will or will be able to use such access, but, those of us who want it and can use it should have access …. without having to go through your medical care provider.
canada should get onboard. It makes people more aware of their health and easier way to keep up. The password keeps everything and everyones info safe.
Millions of dollars spent, and yet this fundamental right is not available to Canadian citizens-who are these people that we allow to control us in this fashion-the healthcare system is fully funded out of the taxes we pay-it’s because we as Canadians are such docile non-complainers that these sorts of imbecilic situations are allowed to persist
Malcolm Brigden
Excellent summative piece! Please check out Canada Health Infoway’s latest national study: Valuing citizen online access to their health information and digital health e-services here: https://www.infoway-inforoute.ca/en/component/edocman/resources/reports/benefits-evaluation/3552-valuing-canadians-secure-access-to-their-health-information-and-digital-health-eservices?Itemid=101. The study identifies evience informed value-based outcomes for patients and the health system using 2016-2017 national utilization rates of four PHR-Functionalities: eView, eVisit, eRx renew – and virtual visits.
Recent articles highlighting virtual visits and patient access to lab results in BC – and other Canadian-based studies in the field are published in an e-Collection of peer-reviewed articles on JMIR: http://www.jmir.org/themes/160.
Thanks for bringing this timely insight to the value of citizen’s online access to their health information!
100% that we as patients should have access to our medical records. This way we can get second opinions or even review the information for ourselves. It’s great that organizations like MedChart are coming along that now allow you to request your records from all these various portals.
Medchart out of Toronto has been working within Canadian hospitals for several years now but I did not see them mentioned above. They are bringing patient access requests online and modernizing hospital health records departments in several Ontario Hospitals to allow health records to be released digitally. For patients, medchart consolidates a secure online patient-owned health record from all of an individual’s healthcare providers and empowers them to control, share, and connect their data. This is available nationally to all Canadians today and has already provided patients with online access to health records from thousands of healthcare providers across every province.
(disclosure I work at medchart)
Wasn’t Infoway supposed to establish an integrated EHR system? Why has it taken so long, and cost so much, with such poor results?
You didn’t mention that Québec is offering this service since last spring. Carnet Santé Québec permits to see radiology reports, lab results, list of medications given at the pharmacy, scheduling appointments with family doctors. Other services will be offered in the future.
http://sante.gouv.qc.ca/en/programmes-et-mesures-daide/carnet-sante-quebec/
Essentia Health in Minnesota uses the same electronic medical record company as Women’s College Hospital, yet the Essentia Health patient portal is far more advanced than ours. I would like to see Canada catch up to the United States in terms of quality of the patient electronic medical record.