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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Something is happening here … #HIMSSEurope18

Sitges1

You try so hard but you don’t understand
Just what you will say when you get home
Because something is happening here but you don’t know what it is
Do you, Mr. Jones?

                                             Ballad of a Thin Man: Bob Dylan

The problem with a Health Information Management Systems Society (HIMSS) meeting – any HIMSS meeting – is that there is so much going on at one time that it is impossible to craft it into one coherent narrative.

That is the challenge with HIMSS Europe 18 currently underway here in Sitges near Barcelona, Spain as hundreds gather to discuss the latest in digital health and health information technology and to network, network, network. And it’s doubly challenging as this meeting is being held in conjunction with Health 2.0, the health innovation conference recently purchased by HIMSS.

(Now wait a minute, wait a minute you say – you get to go all the way to a resort hotel in Spain, with a clothing optional beach within 5 minutes walk, where they serve wine at the some conference buffet luncheons, only to cop out and say you can’t write coherently about it. Patience please).

As a social media ambassador here and lively live tweeter I can supply you with an endless number of insightful tweets or sound bites from just the first 24 hours. For example:

“We have gone from a paper world to a digital world in a short period of time”: Dr. Robert Wachter

“There is a lot of tokenism in health(care) innovation, and some think you can change or even fix health(care) overnight. It is not about technology, nor about the process, it is about changing the culture of an organization”: Lucien Engelen

“Pay patients and value them as the experts that they are”: Marie Ennis-O’Connor

But while I think these tweets provide a useful running commentary of the meeting they – and even the twin meeting hashtags #HIMSSEurope18 and #health2con – provide only a partial and episodic picture of what is going on.

Individual presentations or sessions are also noteworthy. For instance I have never heard as passionate a presentation supporting the role of nurses in the future digital world as that given by Angelien Seiben and Shawna Butler from Radboud University Medical Center. And Dr. Jordi Sorreno Pons a GP and CEO of the Universal Doctor app jammed so many ideas into his 8 minute presentation on future developments in medical innovation that it was almost incomprehensible.

The big subject areas – patient engagement, big data, artificial intelligence – are all given their own sessions or streams here.  But in the time available they tend to focus on specific projects or regional initiatives.

Certain things have changed from HIMSS or eHealth meetings held 15 or 20 years ago. The digitization of patient records is now a reality and not a vision and patients are not only discussed but included (#patientsincluded) as presenters in their own right.

But as to what all of this means for the future of digital health in Europe or worldwide – we are too much in the moment to have a clear picture given the complex nature of health systems and the endless number of variables that impact such systems.

For the numerous people here with an start-up to promote or an niche application to profile the meeting is a far simpler place.

(This is the first of what we hope will be a series of posts from Sitges)

#Ehealth2018: Beyond the keynotes

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Ehealth 2018 to be held in Vancouver, May 27-30 continues to occupy an unchallenged position as Canada’s premier conference dealing with health information technology (IT) and digital health.

Now in its 18th year, the conference shines a light on where Canada stands when it comes to the introduction and implementation of new digital health technologies.

While the keynote speakers at the meeting provide the ‘wow factor’ for those in attendance it is the smaller focused concurrent sessions where one can get a truer sense of what is really going on in research and at the front-lines of care.

A brief review of the sessions and presentations on offer at e-Health 2018 offers some intriguing hints of how the health IT landscape is evolving. Bear in mind the caveat that session titles can often be misleading and relying on titles rather the entire abstracts can often lead – as many conference delegates have learned to their sorrow – to deep disappointment when the talk does not live up to expectations.

This year, even the session headings at e-Health 2018 are more helpful as they tend to be more explicit than most. For example, there is a session titled not just ‘Telehealth’ but “Geography and Telehealth: It’s Not Always Distance”. However, beware over-imaginative session copywriters who can come up with a title such as “Labs, Drugs and Rock and Roll”.

From the session headings it is clear that top-of-mind IT and digital topics such as block chain, telehealth and big data are high on the Canadian agenda this year just as they are south of the border.

Individual presentation headings – as always – range from the meaninglessly vague to the intriguing. It’s worth taking a look at the presenters as well, as this can point to some talks worth bookmarking.

For instance, Dr. Jeremy Theal from North York General Hospital, a leader in computerized physician order entry in Canada is scheduled to talk about “A Novel Provincial Approach to Implementing Advanced Hospital Information Systems”. Long-time digital health stalwart Glenn Lanteigne will be giving a talk titled “Blockchain in Healthcare – Separating the hype from reality,” and another noteworthy presenter will be eConsult pioneer Dr. Erin Keely talking about “Provider Experience – the Fourth Aim of Innovation in Healthcare Technology”.
With patient-centred care once again at the forefront there are also several presentations that seem to merit a look including these two:

  • The Secret is Out: Achieving High Patient Portal Adoption – Selina Brudnicki, University Health Network.
  • Engaged Patients Are Driving Healthcare Innovation and Efficiency – Shannon Malovec, TELUS Health.

As noted above, it is always buyer beware when it comes to picking presentations by title alone but for those of us interested in the use of social media in health care it might be difficult to resist Nishila Mehta’s scheduled presentation on “Data Mining Twitter to Detect Prescribing Cascades: A New Concept.”

However, as everyone has their own concerns and interests it is worth combing the program carefully to find those presentations that provide insights and new information for you personally.

The @CMA_Docs election and Twitter redux

2018-01-09

Five years ago, I wrote about how the two physician candidates to be president-elect of the Canadian Medical Association (@Dr_ChrisSimpson and @GailYentaBeck) were effectively making use of social media and especially Twitter to get their message to prospective voters in Ontario.

It was the first time candidates to lead the national organization for Canada’s physicians had made significant use of social media in their campaigns.

Fast forward (well, slowly advance really) to 2018 and we see four physician candidates in Ontario once again using Twitter to campaign for the president-elect position. But what is spotlighted most significantly is the continued hesitancy of doctors to effectively use social media and digital tools. (The lead article in that 2013 magazine in which I featured Drs. Simpson and Beck talked about challenges for patients in using email to communicate with doctors in Canada – challenges that remain to this day).

Since 2013 there has been only limited use of social media in CMA election campaigns and this is the first time since then that Twitter is being used effectively on the campaign trail by all candidates.

Only one of the current candidates Dr. Darren Larsen (@LarsenDarren) had a long-standing and very strong presence on Twitter but the other three, Drs. Sandy Buchman (@DocSandyB), Atul Kapur (@Kapur_AK)and @PeakMD (Mamta Kautam) have wasted little time in getting up to speed on how to use the platform effectively.

This time around it is not only the candidates who are making use of Twitter but also some of their dedicated supporters and other physicians who are using Twitter to ask questions about where the candidates stand on various issues. The comments and discussions that have been prompted are all informative. Doctors from elsewhere in Canada who are not eligible to vote have been weighing in as have non-physicians.

Sadly it remains a debate in a vacuum… and without a hashtag. With about 34,000 doctors in Ontario eligible to vote in the election, a couple of the candidates still have only a few hundred followers on Twitter so it is unlikely many who will vote are paying attention to any of this discussion and debate. Which is a shame.

While social media use by Ontario doctors in the last year has represented somewhat of a nadir in intra-professional behavior (see my Broken Windows in the House of Medicine), this election so far has shown how a respectful exchange of ideas can take place on Twitter.

Certainly, the webpages of each of the candidates present a much more comprehensive picture of their platforms and positions on important issues. But Twitter and Facebook are being used by these doctors to interact and attempt to differentiate themselves from their colleagues and more voting Ontario doctors should be paying attention … really they should. With the disappearance of most objective medical journalism in Canada, social media is really one of the only places they can find out what their future leaders are saying.

It’s good to see Twitter in use again for this purpose but passing strange that it has taken five years to get back here. Drs. Simpson and Beck? In their own fashion they continue to be two of the most effective physician users of social media in Canada.

 

Doctor dissent: This time it’s personal

Dissent

Two weeks ago a newspaper report noted that the Board of Directors of Doctors Nova Scotia (@Doctors_NS) – the association representing physicians in the province – had removed Dr. Monika Dutt as a sitting Board member.

The incident was reported the same week Doctors Nova Scotia appeared before a Senate committee to protest against planned federal government tax changes which will have a significant financial impact on some physicians. Dr. Monika Dutt (@Monika_Dutt) was one of a small group of physician who has spoken in favour of the elements of the tax package and had promoted an open letter to the federal finance minister generally supporting the government’s proposals. The inference made by many was (despite the absence of any factual information) that Dr. Dutt was removed for taking a stance at odds with the majority viewpoint of the medical association.

The announcement about Dr. Dutt prompted a lengthy thread on Twitter about physicians holding minority views – especially women physicians and medical students and residents – being bullied or intimidated by their colleagues.

Meanwhile last weekend in Ontario, a small but vocal group of opponents to the current leadership of the Ontario Medical Association published a series of tweets highly critical of the association for developing a new code of conduct stating physicians could be disciplined or reported to the provincial licensing college for making remarks deemed to be “hurtful”, “disrespectful”, or “rude”.

Remember, it was in Ontario last year that it was widely reported that the minority of medical students and physicians who supported a proposed new fee deal with the government had been subject to just the type of bullying and intimidation on social media for their views that the OMA appears to be moving address. Nonetheless, this new code was being portrayed as an attempt to stifle those who opposed the current leadership.

All of this is occurring at a time when the Canadian Medical Association (@CMA_Docs) is in the process of developing a new Charter of Shared Values for physicians and its president-elect Dr. Gigi Osler (@drgigiosler) has been active on Twitter stating the CMA wants “want a culture of respect & collegiality, self-care & support, inquiry & reflection, leadership & mentorship, and diversity.”

For its part, the CMA is also strongly opposed to the federal tax cuts as is the OMA and the doctor’s group that opposes the current leadership. However, the CMA has also sponsored open and thoughtful discussions about the deterioration of intra-professional relations between Canadian physicians and the need to create a place for open discourse by physicians with opposing views.

While very different in their details and hiding a complex web of other interwoven issues, these incidents in Ontario and Nova Scotia show just how strongly current cultural and societal changes are impacting the world of Canadian medicine.

Canadian medical politics is no stranger to highly polarized debates. From abortion through to the discussion on medical aid in dying, physicians have often held deeply differing views on what is right. Throughout the 1980s and 1990s, physicians argued vehemently and very publicly about the value of a single, payer health care system and the need for private funding within the system – often during CMA annual council meetings.

However none of these discussions prompted the degree of ill-will and rancour that has surrounding the current discussion over proposed federal tax changes (and at a more local level – the OMA negotiations last year).

Something or things have changed.

Part of it can be attributed to social media and the capacity of individuals to express their views and reach a number of people on platforms such as Twitter not designed for polite, in-depth discourse. As with many social media discussions across all of society, interaction among doctors about politics often deteriorate into simplistic restatements of extreme views. The widely-read nature of blogs also gives some individual doctors a huge, ongoing audience for their particular perspectives.

Also, rather than ethical or moral issues, recent debates have centred on issues that directly threaten the income or financial security of some physicians. Those who are threatened resent the prominence given to the minority views of those who oppose them and also feel physicians who are not directly impacted by the changes should not have a right to comment. A similar argument was made during discussions about fee changes in Ontario where some students were told not to comment on fee issues that did not yet directly involve them. This is a huge slippery slope for physician advocate organizations who want to be able to speak for the profession as a whole.

At a more fundamental level, the male-dominated hierarchical structure that defined the practice of medicine for many decades is being swept away both by the balance in gender numbers between male and female physicians but also societal changes bringing equity and equality to the forefront.

Just as there is talk in society about safe spaces and the need for minorities of any type to have the right to expression without a sense of being intimidated, so some doctors are calling out others for making them feel unsafe about speaking even when no overt intimidation has taken place.

“If you can’t stand the heat, get out of the kitchen” may be the view of some older (or not so old) medical-politicos but it will not stand up today. And while it is commendable for the CMA to state it wants to create a space for open discourse, unless that space is seen as ‘safe’ from the broadest possible perspective it is not likely to attract those who feel they cannot speak up.

Also, while a code of conduct which makes it clear bullying and intimidation does warrant some form of disciplinary response, the OMA is embedded in such a bitter internal battle with some doctors that any such code will be portrayed as stifling free speech rather than helping enshrine it.

At a time when the medical profession feels under threat from governments and society as a whole and Canadian doctors are suffering from burnout in unprecedented numbers, the need for the profession to sort out these issues is paramount. Physicians need organizations that can advocate for them and which they can trust, even when they may disagree personally with some policies.

And this cannot be done unless the profession in Canada acknowledges and moves with the seismic shifts underway in Canadian society that define how members of that society interact with each other.

 

 

I have seen social media’s future – and it’s full of chest physicians (#CHEST2017)

Poster

Last week, I spent valuable time jealously guarding the only power outlet in a conference hall of about 3500 people so I could live tweet the presentations without fearing suddenly losing power in my laptop. At least at that meeting I had a chair pilfered from the rows of interlocking seating rather than having to sit on the floor next to the outlet which has often been the case.

Imagine my awe to read that the American College of Chest Physicians annual meeting being held in Toronto this week was actually holding designated seating for live tweeters at its most important sessions. Wait, there’s more: Delegates were able to add an “I tweet” ribbon to their name badge at the conference as well as find designated selfie areas throughout the conference to take and share photographs.

In addition, many of the sessions were live-streamed via Facebook and YouTube, an educational tweet chat was held during the meeting and perhaps most importantly there was a clinical session designated to the use of social media in medical education.

In truth, many medical conferences offer some if not all (except for the designated Twitter seating) of these elements plus more to encourage social media use. As Dr. Ali Jalali, one of Canada’s leading physician voices in social media recently noted in an interview, social media use (at least to the extent of having a hashtag designation for the meeting) has become the norm rather than the exception at medical conferences.

However, the American College of Chest Physicians seems to pushing the boundaries both in terms of the supports for social media use as well as the research being done on the subject.

The  session on social media involved pioneering presentations on the use of Snapchat and Storify in medical education. The session also documented the significant growth in the use of Twitter at major U.S. critical care conferences over the past four years, with the abstract concluding that despite a slowing of growth by Twitter itself “the medical community usage of Twitter has grown significantly.”

As is often the case with social media and medical specialties, one physician – namely Dr. Christopher Carroll (@ChrisCarrollMD) seems to be a driving force in this growth. Dr. Carroll is a pediatric critical care physician at Connecticut Children’s Medical Center, Professor of Pediatrics at the University of Connecticut, and social media editor at the journal CHEST – which was one of the first journals to have such a position, I believe.

Social media tools and platforms are a long way from entering the mainstream of medical practice, but as CHEST 2017 indicates, the same cannot be said when it comes to medical conferences.

 

CMA (@CMA_Docs) ups social media ante

Quebec City

The Canadian Medical Association (CMA) celebrated its 150th anniversary in Quebec City by moving boldly into the 21st century in terms of the organization’s use of social media and digital communications.

The CMA has always attempted to keep up with communications trends and many years ago designated a Twitter hashtag to the meeting (#CMA150 this year) as well as making live broadcasts of most sessions at the meeting available online for some time.

This is in keeping with the ethos of the volunteer, national organization which represents more than 80,000 doctors. At the very first meeting in 1867 (the same year as the birth of Canada), delegates noted the media had been excluded from the meeting and were quick to invite them to attend. Ever since – even on issues as heated as abortion or medical assistance in dying – the meetings have been open to the media.

But this year represents somewhat of a seismic shift for the CMA in line with a fundamental re-think of how the annual General Council meeting can remain relevant. Interestingly it came at the same time as delegates tackled head-on issues of “incivility” that have marked interactions between some of Canada’s doctors on Twitter and Facebook.

Not surprisingly, the meeting was heavily tweeted (graphic courtesy of Symplur). While only a small minority of Canadian physicians use Twitter professionally many of these were in attendance at the meeting.

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But this Twitter activity was accompanied for the first time by live discussions of the most important topics on both Periscope and Facebook live. In fact, a discussion of senior’s care issues with Federal Health Minister Dr. Jane Philpott was driven by questions from those who follow the CMA’s Facebook page.

Discussion in the Council chambers was also informed by questions from doctors participating via a conference app – another first for the CMA. This app was heavily promoted both as a way of participating during the meeting but also as an opportunity to continue the discussion on various topics after the meeting concluded.

The discussion of physician’s improper use of social media to attack colleagues was the subject of a panel discussion nested within a broader debate about developing a first professional code of conduct and professionalism for Canadian doctors. Examples of such conduct were available even in the days leading up to the meeting.

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Those who had been challenged on social media appeared willing to forgive their colleagues and attribute the negative comments to the excessive stresses and challenges facing doctors in Canada today. But what many might consider unprofessional conduct on Twitter continued even during CMA’s meeting and was commented on by the Speaker for the meeting.

While CMA’s has always been seen as the foremost national advocate for doctors and indirectly the interest of patients, its latest strategic plan puts an emphasis on being “patient-centred” and there is even discussion of considering putting patients on the CMA Board of Directors.

Quebec City is where the CMA began but this year demonstrated that the organization was definitely not planning its future by looking back.