Patient portals – windows to health care

Tweetchat_Patient_Portals_Graphic

Patient portals that offer the ability to access information from a hospital or physician provide a valuable window to at least part of a person’s health and care. But such portals remain unavailable to many and often fall short of being comprehensive.

Those were conclusions that could be drawn from a lively chat on Twitter that I helped coordinate on behalf of Health Quality Ontario (HQO) on March 20. Hosted by HQO Interim President and CEO Anna Greenberg (@AnnaGreenbergON) and respected patient advisor Alies Maybee (@amaybee), at #HQOchat the discussion saw more than 500 tweets from almost 100 participants over the course of an hour.

However, that’s just part of the story as tweets on the topic continue to be seen on the @HQOntario Twitter account days after the chat. The topic of configuring patient portals also promoted a lively exchange between a largely Ontario-based group of participants on Twitter earlier this year.

Greenberg and Maybee set the stage for the chat in a background blog that also framed the debate by asking about people’s experiences with portals, the scope of portals and their functionality. The portal discussion inevitably overlapped a discussion on electronic access to one’s health record even though this is often not a function of hospital-based portals.

The chat involved many patients, physicians, representatives from one of largest patient portals in the province (@MyUHNPatientPortal), Canada Health Infoway (@Infoway), other senior HQO staff, and others including representatives of quality care organizations and the @MyOpenNotes initiative.

As Ontario currently has no province-wide patient portal initiative (unlike Quebec, Nova Scotia and Alberta) it was not surprising that patients described a wide range of experiences with the portals. While some people talked of having up to six different portals, others said they had no access to such a portal.

Many expressed thanks for having access to what a patient portal has to offer. One of the most positively received tweets came from a specialist at the hepatology clinic at UHN who stated:

Our staff have embraced it (clinicians and support staff): fewer calls: patients happier: less printing of results for patients: patients pointing out errors. Overall very positive

Others felt the experience fell short of expectations. To quote one comment:

I have had access to a patient portal and while the concept is very exciting, I have been disappointed with the reality. The patient portal I have used has a limited # of parts of my record and lacks notes and referrals etc. so it is not a complete picture 

And Maybee commented:

I found that the hospital needs to update appointments right away. I went for an appointment listed on the portal, waited 45 mins until someone told me “Oh, that was cancelled but we are behind a lot on updating the portal.” Way to discourage us! 

The chat closed with a discussion of whether patients should be able to access their own laboratory or other test results before these have been discussed with their physician and the response was – with a few dissenters and caveats – an overwhelming ‘yes’. The same was true on the issue of whether patients should have access to their physician’s notes.

Dr. Irfan Dhalla (@IrfanDhalla), a general internist and VP at HQO commented:

Good news is that overwhelming majority of physicians are supportive of patients having access to their own notes. Some express nervousness, but usually this goes away after some experience.

It is clear that recent efforts to improve the availability and functionality of patient portals are paying dividends. But while they are useful tools, these portals managed by hospitals, clinics or medical record vendors are no answer for patients who seek a complete record of their health and care that they control.

And as another Canadian-lead discussion on Twitter a week ago makes quite clear, the numerous barriers facing patients who want to easily correct errors in their own medical record show how far the culture and environment need to change to truly make the new digital health environment patient-centred.

As Maybee commented:

We need to see the great stuff in portals all in one place — perhaps an aggregator?

To which another participant commented:

Bingo – I’m going to go one step further (sorry) but what I really want is one record, regardless of hospital, organization or discipline. If I go to 6 hospitals, I want to have a portal with the complete picture and full record. Call me a dreamer! 

And two other comments which summarize this point:

Allow patients to control their own data – we’ve spoken to thousands that want to share and export to their circle of care. System level change takes time re: connectivity, but empowering patients to share can be done sooner. Patient control = patient centred. 

While most of Canada have no access, some of us here in the know have several portals. That’s great! And it’s confusing. With @access2022 & @infoway talking to vendors now about creating the #digitalhealth highway for HC data in Canada we need #interoperability #HQOChat

 

 

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