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Alies Maybee and Anna Greenberg

Progress with patient portals

A conversation between Alies Maybee and Anna Greenberg

Anna Greenberg: One of the widest chasms in digital health care today is the divide between people’s wish to access their own medical records electronically and their ability to do so. According to a 2018 Canada Health Infoway survey, 74% of Ontario residents who currently have no access would like electronic access to their health records, and only 31% currently can access their own health records.

One of the most convenient ways for patients to access their medical information is through a patient portal. These have existed for more than a decade at individual hospitals and are now becoming more widespread – but still only to provide information from one institution.
Depending on the portal, patients can view:

• Physician notes, personal medical history and medication records
• Laboratory and test results
• Appointment details
• Electronic means of communicating with your physician
• General medical and health information

On our own patient and family advisory council, only a few members have had experience with such a portal. Those who did told us it made a world of difference. Others talked of struggling to assemble this type of information themselves.

Alies Maybee: I recently attended a conference hosted by Canada Health Infoway where Julie Drury, chair of the Ontario Minister’s Patient and Family Advisory Council, described the challenges of compiling and managing information about her daughter’s care at multiple hospitals. She showed the huge mound of paper binders of medical information that she had to cart around and keep updated. And this was only a few years ago. I think patient portals have the potential to significantly ease this burden, but portals need to give patients access to more of their information and be better connected with each other when they exist at different care settings.

Anna Greenberg: Nova Scotia, Quebec and Alberta have already launched or are in the process of launching a provincial patient portal with different degrees of functionality. While a province-wide patient portal does not exist in Ontario, a number of hospitals and major hospital networks have their versions of portals and at least one private medical laboratory allows patients to access their results online. Still, the most recently available data from 2016 shows only 6% of patients in Ontario can access their own electronic medical record.

Alies Maybee: My understanding is there are a bunch of patient portals in Metropolitan Toronto alone. Currently, I for one am using different patient portals at the two hospitals I frequent. My third hospital does not offer me a patient portal. So, there are two versions of me that exist out there digitally but neither represent me as I understand myself in a complete health context. It seems most current patient portals are unable to share information. Hospital portals are quite separate from the portals that a primary care doctor might offer. In my case, my primary care doctor’s EMR likely has the capability of a portal but they have not made it available. We as patients need information across all sites of care and the ability to access that information across jurisdictions.

Anna Greenberg: We’ve known for a while from the research literature that there are numerous benefits from being able to check your own lab results, prescription and overall medical history. This includes improving overall health knowledge, alleviating anxiety, improved satisfaction and an improvement in communications with their health care provider(s). On top of that, as more and more patients have access to their own information, we would expect:

• More up-to-date comprehensive and accurate records due to patient review and scrutiny.
• Improved patient safety if patients and their physicians each have timely access to important test results.
• Improved decision-making through allowing patients to be more involved in their care.

Alies Maybee: For me, the most valuable element of what I can access through the patient portal is my ability to get my specialists’ notes. The value of this mirrors findings from the OpenNotes initiative which encourages health care providers to share notes they record about a patient visit. Also, I can get my laboratory test results through a portal and see the results relative to normal results. I can also have my medical appointments entered into the portal, even though I still have to phone to schedule or change them.

Anna Greenberg: One of the challenges in designing and optimizing the use of patient portals has been concern from clinicians about providing patients with access to laboratory and test results, or reports from specialists that patients may not understand or may misinterpret. Some portals do not allow access to these results until after the patient has had a chance to meet with their physician and discuss them. Physicians also have concerns about allowing patients to update their medical records or add other medical or health information that may not be part of their (the physician’s) record. However, surveys with primary care physicians indicate most find these fears unfounded. Some physicians are also concerned about the timeliness and reliability of such information.

Alies Maybee: Many clinicians still think medical information about an individual is too complex for patients to be looking at so they shouldn’t share it. That seems a bit paternalistic to me. As with many people I know, I am perfectly capable of understanding what I can’t understand myself. And I can also research and look up things. I also think patients need to be able to see what is in their record and ask that errors of fact be corrected. Another thing I’d like to raise is consent. Ideally a portal allows patients to select the people they want to share their health data with from family to other providers like alternative health services providers.

Anna Greenberg: Last summer, Drs. Iris Gorfinkel and Joel Lexchin published an article in CMAJ advocating that provincial governments facilitate giving all Canadians access to their primary care medical records through a portal. This prompted a lively ongoing discussion on Twitter about the benefits and drawbacks of having a single patient portal that works across institutions and the optimal way this would be designed. There is no simple answer to why this has not yet happened and why patient portals are not in wider use despite patient demand. Cost, logistics, privacy considerations and cultural factors have likely all played a role.

Alies Maybee: Giving patients unrestricted access to their own medical record and personal health information online is a fundamental requirement for a robust digital health care system. When patients have this kind of access, they can become truly informed health care consumers and partner in their own health care. While there may be logistical and technical challenges in developing a patient portal that I can access anywhere at anytime, I think it is imperative that such a platform be developed.

We are interested in your views on patient portals. Join Alies Maybee (@amaybee) and Anna Greenberg (@AnnaGreenbergON) on March 20 at 8 pm (ET) Twitter for a discussion of patient portals using the #HQOchat hashtag. We will be answering the following questions:

Q1. Have you had any experience with a patient portal and if so, what is your assessment?
Q2. What supports or tools, if any, do you think are needed for patients when they access their own medical information?
Q3. What do you think is the most important function of a patient portal?
              a. To allow patients access to their entire medical record
              b. To give patients the ability to access their physician notes
              c. To post laboratory and test results in real time
              d. To enable patients to securely communicate with their physician
              e. To enable patients to make appointments with their physician online
Q4. Should patients be able to access medical information on a portal before it is seen by their physician?

We are looking forward to discussing these issues with you on Twitter on March 20 at 8 pm (ET). Join us at #HQOchat

Alies Maybee is a patient advisor to many health care organizations in Ontario. Anna Greenberg is Interim President and CEO of Health Quality Ontario

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8 comments on article "Progress with patient portals"

Case Bassie

For me, I have no reservations about keeping up to date on my medical conditions. I am a type 1 diabetic and keep a pretty close watch. I also access my blood test results on line so am able to question my doctors on any results. Fortunately it’s pretty easy and no bad results. My relationships with the medical practitioners is very good. Not all people are that lucky or with it. It would be beneficial to have ALL of the data available in one place. To be prepared before you see a doctor. However, not all people are able to deal with that. So be careful.

Michael McCallion Sr.

Having access to an Indiviidual's own record data will be a means to increase an individual's general awareness of maintaining personal literacy and family communication. A reach-out practice for democracy and Human Rights of the individual. Thank you for establishing such a positive process.

Bill Holling

A couple comments I am in Chatham-Kent and have only heard of these portals in discussions with Toronto so how far a field are they also have you given consideration to the people that don't have the internet. I mean no matter how much they want it they can't get There are a lot of good things out there but the masses don't hear about them

Murray James O’Brien

I have I served nearly ten years on a hospital board plus a LHIN board combined and I did not have a medical background. But yet I was very comfortable with comprehending the info I needed to contribute poitively. If I encountered something I didn’t understand fully, I did my research. It wasn’t that difficult. Today, I can’t even access my own medical data partially because I’m told it’s too complicated. More importantly I think it’s because access to personal medical records on a universal database is simply not a priority to our elected officials. What a shame when banks can do it for a profit incentive but our medical community can’t do it drastically improve our health and save money along the way. When are they going to finally figure this out?

Henry Lowi

Each patient should receive a monthly statement, similar to a credit card statement, showing: date of service/procedure, name of practitioner/clinic, brief description of the service/procedure, and amount billed to OHIP for the procedure/service.

That is the most elementary form of patient education, patient empowerment, and patient-centred medicine, as well as public (users and taxpayers) oversight of the use of scarce medicare resources.

The technology is readily available on an almost off-the-shelf basis, and only the will is lacking to bring patient-centred healthcare into the 21st century.

Judith Wahl

As patients are entitled to access and get copies of their own records subject to some limitations, the portal access makes sense and would avoid people having to pursue a legal remedy to get this access. One concern I have is the MISINFORMATION in some of these portals particularly on issues of who is the patients SDM if the patient becomes incapable, misinformation about "advance care planning" - the misinfo is on advance directives which don't exist in Ontario and about who takes directions from patients advance wishes -- which SHOULD be only the SDM ordinarily and the health practitioner ONLY in an emergency if the wish is for a refusal of treatment.. The records also may not record whether the patient SDM of the incapable person has given an INFORMED CONSENT to the treatment or care plan recorded. ,This info is as important as the details of the care and test results if care is supposed to be patient centred. Id be interested in seeing existing portals to see if they comply with the law before new portals further embed misinformation that relates to patients rights.

gary dickson

I respectfully suggest that at least some of this discussion misses a critical point. A patient portal is optimal when it is a feature of a province-wide fully functioning electronic health record. Having multiple patient portals for any given patient with respect to a variety of health providers is hugely problematic. What makes patient portals work in the UK, Alberta and Saskatchewan is that they are part of a comprehensive EHR. The current fragmentation of PHI in Ontario will not be satisfactorily resolved until we have such an EHR. Having said that, it is at least encouraging that eHealth Ontario is considering patient portals to be one of the deliverables when we finally get to that stage.


@gary dickson makes a great critical point that we cannot have multiple patient portals for a patient or caregiver to access. We have gone too far down economically to rip out the existing EHRs (at hospital's for example) to replace with a provide-wide EHR and hance a central patient portal. No one has been able to figure out how to deal with the myriad EHRs. We have been stuck at this stage for the longest time and I cannot see solutions. We talke about integration, but no one has shown how that will work - not just from a backend technology, but from a front end patient or caregiver perspective.

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