A death on Twitter

shamji

I was on a train moving through the darkness of Eastern Ontario between Toronto and Ottawa when I saw the notification on Twitter that the body of Dr. Elana Fric-Shamji, a family physician at Scarborough General Hospital in Toronto had been found.

It was news that hit the small but active community of Ontario doctors using social media very hard because Dr. Fric-Shamji had been one of them.

For a couple of hours before the announcement of the body’s discovery there had been uneasy communications between some on Twitter after a news report that she had been reported missing. Those worried comments were quickly followed by expressions of sadness and dismay.

Her Twitter account reflected the vibracy of an individual who was enjoying playing with the media as well as becoming more engaged in the local politics of medicine in Ontario.

“What can I say, I love Lord of the Rings,” was her final tweet.

Days earlier, Dr. Fric-Shamji had found Twitter fame (such as it is) with a tweet posted as part of the #trudeaueulogies hashtag mocking Canada’s Prime Minister for praising Fidel Castro at his death, without remarking on the negative qualities of his rule.

“Saddened about the passing of Sauron who, while heavy-handed, did advocate for open borders and usher in industrial era,” tweeted Dr. Fric-Shamji in a tweet that yielded 622 retweets and 945 likes. (For those needing an explanation, Sauron is the main villain in Lord of the Rings)

A week previously, Dr. Fric-Shamji had participated in the council meeting of the Ontario Medical Association – the body which represents the province’s physicians. It was a cathartic meeting for an organization badly torn recently by internal divisions on how to deal with a government unwilling to negotiate on equal terms.

It is also an organization whose members have made transformative changes through the use of social media, and especially Twitter, as internal advocacy and networking tools.

Many who were in attendance at that meeting remembered Dr. Fric-Shamji and her excitement with her new roles and opportunities – in both the professional and personal spheres.

“Proud to represent #Scarborough physicians at #OMACouncil16,” she had tweeted. “Unity, change and advocacy on the agenda.”

The day after the announcement of her death, the Ontario Medical Association issued a news release from President Dr. Virginia Walley, also posted to Twitter, noting how the “close knit community” of Ontario doctors was stunned by the “tragic news” of her untimely death.

That community is now looking for a way to honour Dr. Fric-Shamji’s legacy and help her three surviving young children.

It took a couple of days for the print media to catch up but local and national newspaper are now filled by the story of her death and news that her physician husband had been charged with her murder.

Dr. Fric-Shamjii is not the first of the Twitter physician community to die this year.

Dr. Kate Granger (#hellomynameis) passed away after arguably bringing more humanity to the provision of medical care in the U.K. by asking those providing care to identify themselves by name. Tens of thousands have been touched by her message and her last days of life.

And there were others.  Dr. David Lewis (@DrPlumEU) who died a few years ago, for instance, lives on through his Twitter account which continues to curate news content based on parameters set by Dr. Lewis himself.

I did not know Dr. Fric-Shamji personally and I am not a physician but I was one of 157 people she followed on Twitter … and I followed her.

A felt a few words should be said from here.

 

 

Walk and chew gum @Helenbevan? I fear not

bevan-1

Is it possible to walk and chew gum at the same time?

Helen Bevan, the leading expert in transformative change for the U.K.’s National Health Service recently posed a similar question to an audience at a major health policy conference in Toronto, Canada and the answer, unfortunately, was ‘no’.

The actual issue raised by Bevan had nothing to do with ambulation and mastication but rather with the potential to listen and comprehend a speaker while simultaneously engaging with others in a discussion of the speaker’s comments on social media.

Results of the real time experiment seemed to suggest there is a limit to the amount of engagement even the most dedicated networkers can undertake with one of the best social media tools – Twitter – while also paying attention to an absorbing presenter.

At her suggestion, a few people tried gamely to discuss issues raised by Bevan on Twitter while she was still speaking, but these conversations quickly petered out as those in the audience returned their attention to Bevan, and directly tweeting her comments.

What Bevan definitely did not do was undermine her argument about the power of social media to expand the dissemination of the important ideas – even though this exercise may have provided fuel for those who argue that live tweeting distracts from taking full benefit from listening to speakers at conferences.

Watching a graphic representation of tweeting during Bevan’s plenary address at the Health Quality Transformation conference is like watching a fireworks display as Bevan’s point on the map explodes as hundreds of tweets referencing @HelenBevan and her presentation spread out over the map during the hour of her talk.

The growing power of the type of informal networks that social media platforms support to make real change in the health care system was one of the key themes in the multiple keynote and more informal presentations Bevan made while attending a number of meetings hosted by Health Quality Ontario.

She also talked about the importance of the new connectivity these social media platforms provide to link people within organizations as well as nationally and globally.

But Bevan’s impromptu attempt to get people to participate in multi-task engagement suggests there are some limits to what even social media can accomplish if you ask that it all happen at the same time.

 

 

 

 

 

 

The patient as expert: What does that mean?

patients

A fast-paced tweetchat based in Ireland and held recently provided many insights into the current status of patient involvement in the health care system and the role of ‘expert patients.’

The chat was held at #Irishmed, a health-related tweetchat, hosted by Dr. Liam Farrell (@drlfarrell), an irrepressible former Irish GP, and columnist for the British Medical Journal.

Over the course of one hour and more than 1200 tweets, about 100 participants from Ireland and as far afield as the Philippines and Canada debated five questions concerning the role of expert patients and the challenges they face.

Participants included several patient advocates as well as physicians, nurses and other health care providers.

First up was a discussion of what it means to be an expert patient and whether the term is a useful one.

Many pointed out that patients are the experts in their own condition and that this needed to be acknowledged by health care providers and the system.

“It’s about valuing the expertise of the patient with lived experience alongside clinical expertise,” was one comment.

“Some patients can know more than treating practitioner about their condition. Listen to them. Learn from them,” was another. “The better informed they are, better they learn their conditions, the more they can contribute,” another person added.

However Farrell expressed concern about the growth in the number of patient advocates and the system’s need for such individuals. “Bit concerned that Expert Patients will become yet another HC profession, another layer of bureaucracy,” he tweeted.

Asked the role of expert patients, participants identified the value of involving them in everything from health policy planning and decision making to more informal roles. “…we educate strangers on our challenges, talk to the newly diagnosed and coordinate our care,” said one person.

Noirin O’Neill (@Noirin0Neill) a leukemia survivor and Irish patient advocate who participated extensively in the chat through her husband, tweeted that health care providers (HCPs) “complain about lack of resources, time, blah blah – create a new generation of patients to help.”

Others noted that all patients – not just experts – “should be listened to, informed, respected, and involved in their care.”

The chat then went somewhat off-script with a discussion of whether expert patients should be paid for playing formal roles in the health care system. Most argued that because of the time-commitment and importance of their roles, patients should be paid for this work.

“Many have suffered financially through their conditions. We should not make that worse …” was one comment.

Lack of remuneration was identified as one of the main challenges involved in being an expert patient.

Asked to enumerate these challenges one person tweeted: “trying to manage poor health with involvement activities, being taken for granted, only person in room not paid for time.”

“Juggling work, health, finances, bureaucracy, stigma, tokenism … may need more than 140 characters for this on(e)” another person tweeted.

“Being a patient advocate is a full-time job. Lots of invites, lots of phone calls, lots of talk – for no pay. Unfair,” tweeted O’Neill.

Others talked about everyone wanting patient participation at conferences but questioning their expertise or just having them serve as ‘token’ patients.

At the end of the debate, there were optimistic comments expressed such as that “ working with expert patients should lead to new era of optimism, opportunities and solutions to improve health outcomes for all.”

Finally, it was stated that those advocates currently serving as patient experts “need to send the elevator back down to the next gen of experts.”

 (Those wishing a more comprehensive overview of the chat can see the excellent Storify prepared by Marie Ennis O’Connor, (@JBCC) 

 

 

 

 

 

Social media and hospitals: Now more than just pretty pictures

Lakeridge Health report_cover

For leading hospitals, the use of social media tools and platforms has moved from giving in to the demands of the head of marketing to at least have a Facebook page, to a recognition that use of social media can add value throughout the enterprise.

This evolution beyond using social media to post nice pictures and videos of hospitals doing good things has occurred rapidly since the emergence of the first social media platforms a decade ago and holds great potential for health care institutions who want to communicate effectively with their patients.

This is my conclusion following an extensive review of the literature on social media use in North American hospitals and interviews with experts both in Canada and the U.S. who confirm this trend. This work was done on behalf of Lakeridge Health in Oshawa, Ontario as part of a review to improve patient experience at that institution.

While they acknowledge the huge potential for social media in the health care setting, leaders in health communications also recognize that social tools and channels represent just another series of communications options and should be used only as appropriate.

The only comprehensive survey of social media use by U.S. hospitals published by University of Pennsylvania researchers in 2014 showed 94.4% of the more than 3,300 hospitals polled had a Facebook account and just over half had a Twitter account. Anecdotal evidence suggests the same is true of Canadian hospitals.

“There are some really creative people out there who are finding ways to use these tools to engage patients and get their messages out,” said Christina Thielst, a Santa Barbara, California-based hospital administrator, consultant and author who has been following the use of social media by health care organizations for more than 30 years.

Ann Fuller, VP for volunteers, communications and information resources for the Children’s Hospital of Eastern Ontario, was quoted in 2013 as saying: “In Canada, in health care we’re at a point where most hospitals accept the role of social media for branding and communication, but only the lead adopters are using it for patient engagement and for clinical use.”

Since that time, she says “a lot of the perceived risks and threats of social media have lessened” yet, she adds, while “everyone agrees that social media can and should be used, and there are benefits to it, some of that stigma still exists.”

“It’s not about creating a community and trying to integrate those experts into it. It’s using social media to come up with a new platform for doing what they already do—such as engaging patients. It’s another way of bringing people together,” said Dave Bourne, a former communications director for Baycrest and the Scarborough Hospital and now director of communications for Sienna Senior Living.

But despite the most popular social media tools having been around for a decade or more, the optimal use of these tools in hospitals has yet to solidify.

“I don’t think anybody has nailed it to the point where there are best practices,” said Bourne.

Those looking for a leading Canadian hospital with regards to social media could do far worse than to study the experience of the Michael Garron Hospital in Toronto. That institution has taken an incremental approach and changed the hospital culture to slowly integrate social media into many of the hospital’s functions. Elements of that approach include

  • Publication of a policy or guidelines to assist hospital staff in the appropriate use of social media
  • Training of the senior management team as a group in how to use common social media tools such as Twitter.
  • Ongoing education and support from the communications team to assist any staff in using social media
  • Integrating social media tools into a new proactive approach to patient engagement which included aggressive timelines for dealing with patient concerns.
  • Integrating social media use into a new, more responsive approach to leadership

While social media remains an important and innovative set of tools for telling stories about the good things a hospital can do, it is clear that the most innovative institutions are also using those tools to facilitate both internal and external engagement with the communities they serve.

As Isabel Jordon, a BC-based patient advocate and chair of the Rare Disease Foundation, says: “the way I would like a hospital to use social media is to reach out to people to find out what we want from them; if there are going to be changes or something new coming down the pipe—to reach out and engage us before something is going to happen.”

(P.S. Anyone interested interested in publishing a more extensive analysis of this research please feel free to get in touch)

 

 

 

Social media transforms (@OntariosDoctors) dispute

Never has Canadian medical politics been so accessible, informative and, frankly, entertaining – all thanks to social media.

For good or bad, this is the new reality for a profession used to dealing with its financial negotiations in confidential discussions behind closed doors.

The current knock ‘em down drag ‘em out fight between those supporting and those opposing a new draft professional services agreement between the Ontario Medical Association (@OntariosDoctors) and the provincial government comes to a head this Sunday at a general meeting of the association to vote on the proposed deal.

The backstory behind this particular agreement to set fees for Ontario doctors is too long and complex to explain in this blog post. Suffice it do say that the leadership of the OMA is lobbying the membership hard to support the deal, while a well-organized opposition is urging its rejection and a return to the bargaining table to better halt government cuts and gain the right to binding arbitration.

All of this is being played out daily on social media and especially Twitter and blogs, as advocates for both sides post thoughtful essays on their views or engage in lively wars of words with their opponents. For its part the OMA has supplemented tweets and blog posts by leaders such as @GailYentaBeck, @ScottWooder and @VirginiaWalley with YouTube clips from well-known provincial physicians voicing support for the deal.

The profile of the whole situation has been raised by the involvement of André Picard (@picardonhealth), the nation’s leading health reporter and Steve Paikin (@spaikin), a leading provincial TV political affairs commentator, who together have more than 120,000 followers on Twitter. Picard especially has taken an active role in the debate challenging some views and chiding others for inappropriate comments.

Ontario doctors were among the first in Canada to recognize the potential for advocacy offered by social media platforms such as Twitter. It is sad that probably only a minority of the province’s physicians are observing Twitter and other channels to follow the discussions, debate, arguments, and bon mots.

Some leading Ontario physician bloggers and social media commentators were asked whether social media had inflamed or informed the current debate about the Ontario deal.

“I believe all communication does both,” said Dr. Shawn Whatley (@shawn_whatley). “Social media is no exception.”

“In my now nearly 40 years as an Ontario physician I have never witnessed such passionate engagement with OMA affairs or the political process,” said Dr. Alan Drummond (@alandrummond2). “That ‘movement’, if I can call it that, was directly fueled by the use of social media and the enhanced connectivity between different regions and specialties.”

“I was surprised by how many of my physician colleagues in Perth have expressed that their opinions were being formulated by arguments made on Twitter.  This was not necessarily all for the good.   Initially they were pleased with the nuanced concerns about the agreement; as things dragged on they were starting to get pissed off with all the negativity. Nevertheless, it is clear to me that social media has changed the game.”

Drummond noted the “vitriolic and misguided personal attacks” by some on social media and added “if we are going to put ourselves out there in public we have to remember that “the whole world is watching” and behave accordingly.”

Dr. Cathy Faulds (@fauldsca) said there are pros and cons to using social media for such discussions. On the plus side she references the ability to spread a diversity of views, prevent groupthink and “eliminate the paternalism that has plagued organizations and our medical culture.”

“The depth of learning and sharing is fantastic and reminds me of the surgeons’ lounge in my earlier days of practice. It is generally fun to be part of this (Twitter) crowd and the majority respect boundaries and are collegial),” she said.

The downside of debating on Twitter according to Faulds, include the 140 character limit, the “conversational swirl” that can make it difficult at times to follow discussion threads, and anonymity that can make it difficult to give context to some comments. She also noted the presence of “schoolyard bullies” and the fact cliques can easily develop that people block others they do not agree with.

Dr. Mario Elia (@supermarioelia) has a much broader condemnation of the social media element of the current debate.

“SM has allowed this (debate) process to spiral right out of control, allowing opposing positions to be distorted and for each side to attribute their worst fears to the opposing group. It has been horrific.”

Dr. Nadia Alam (@DocSchmadia), has possibly been the most active Ontario doctor in the social media debate and she describes that discussion as “eye-opening.”

“Normally mild-mannered docs now appear fierce, antagonistic even. Normally complex ideas are distilled into pivotal moments of wisdom.

“Social media decentralizes communication and is unparalleled in its reach across time and physical boundary. The price though is in the steep learning curve. I find it can be an unforgiving environment: adept users will judge and sometimes shame the clumsier novices.”

She describes the use of social media as a “two-edged sword” in that “it informs but it can also inadvertently ignite hostility. It can bring people together or tear them apart. It can be inclusive, but can also be used to ostracize people. It can help in the spread of information, but it can also feel like you’re lost amidst the noise.”

From these comments it appears that to many Ontario doctors, the social media platforms that most of their colleagues are reluctant to use for professional purposes has changed forever the nature of political discourse within the profession in this country.

(The author would like to thank all physicians who provided input into this post)

 

 

Patients with a voice but few MDs hear: Social media 2016

Emily

“Patients with serious illness don’t have time for incremental change. We need social media – transformational change with just one click.”

With those words at the recent Doctors 2.0 and You conference in Paris, Emily Kramer-Golinkoff (@emilykg1) encapsulated the promise and potential that social media channels and platforms bring for patient advocates and engaged patients everywhere.

It stood in stark contrast to my own presentation showing how few Canadian doctors have adopted social media in their professional lives and how U.S. data is probably only marginally better.

This divide between how patients are using social media in an attempt to enrich and transform their lives but lack a concomitant health care professional social media community to engage with is one of the more troublesome aspects of the current digital revolution in health.

Emily is a 31-year-old with advanced stage cystic fibrosis which does not respond to new medications on the market. She used her time at the podium in Paris to deliver a powerful address to describe her work in co-founding Emily’s Entourage which has had huge success through social media in raising more than $2.1 million to fast-track CF research.

She was preceded earlier in the morning by Kaat Swartebroeckx (@KSwartebroeckx), a 17-year-old Belgian student who described with evangelical fervor her work to help children with cancer, once again building on the reach of social media platforms such as Facebook.

Emily and Kaat were not the only patients with chronic illnesses or patient advocates at this year’s Doctors 2.0 meeting and all are utilizing social media in some form to make connections or gather and disseminate information.

Using social media in health is a given for these people: For the medical profession in 2016, not nearly so much.

In evaluating, professional social media use by physicians in Canada and the U.S. I had to stress that most practising physicians have little interest and even less experience in using social media for their work. Unfortunately, there is no evidence this is likely to change in the near future.

There are exceptions of course and some of these physicians were at Doctors 2.0 too: People such as Dr. Gia Sision (@giasison) from the Philippines and Hungarian medical futurist Dr. Bertalan Mesko (@Berci). But surveys demonstrate that these doctors are a definite minority.

For the busy practising physician in Canada or any other Western nation, professional use of social media is seen as a time-stealing luxury with few if any benefits and many potential pitfalls.

Given the degree to which the people they care for are seeking out health information, support, or solutions through social media, this is a problem.

To quote – as I often do these days – the head of Canada’s medical health insurance organization Dr. Hartley Stern: “While individual physicians are at different stages in their use of social media, it is a journey all physicians will eventually take.”

Although I believe this to be true, it is a journey for which most physicians have not yet bought a ticket.

#Ehealth2016 – inquiring minds want to know

 

ehealth_ambassadors_badge_300x300Canada’s premier conference on health information technology – #ehealth2016 – is now less than a month away.

That means it’s a good time to start to contemplate some of the big questions facing the health IT community in Canada and wondering whether this mega-meeting hosted in Vancouver.\, courtesy of COACH, Infoway and CIHI will provide any answers to these questions.

At its worst, this annual meeting can be an annoying combination of sometimes irrelevant keynote speakers and simultaneous sessions that do not live up to their titles/abstracts. But over the past decade e-health (however one chooses to write the name – hyphen, no hyphen, capital on ‘e’ or no capital on ‘e’ etc.) has become THE meeting for those interested in health IT to network, hear leaders in the field and gain insights into really interesting work going on at local/regional and provincial/territorial levels.

As an observer, I would suggest a few interesting questions this conference may help to provide answers for:

  • With the death or evolution of the big dinosaur programs for funding physician EMRs (POSP, PITO etc.) what is being done to continue to involve and engage physicians in improving how they use electronic records to improve care?
  • What is Infoway planning on doing with its new infusion of funding courtesy of the last federal budget?
  • Is patient engagement a thing in Canada in health IT and if so what does it mean?
  • Is the vendor space for EMRs and EHRs going to continue to consolidate ?
  • And that interoperability issue – is anything substantive happening to better connect physicians and hospitals.
  • Big data. (enough said).
  • Are hospitals and practitioners adapting to the mobile revolution in health?
  • Are these the correct questions to be asking? At HIMSS this year there was a big shift towards discussing digital connectivity beyond the electronic record and major discussions about data security in health. Should Canada be having those discussions too.

Inquiring minds want to know.