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


“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.

A Canadian leaves Vegas (#HIMSS16)


I came to this year’s HIMSS annual meeting in Las Vegas to find out more about the current status of patient and physician engagement in the US health care system.

As always, HIMSS came through – (if you will pardon the Vegas-type analogy) in spades. But as always with HIMSS it was too much of a good thing and attempting to synthesize what you see and hear is almost an impossible task.

First there was the language barrier. No, not that I was trying to navigate the conference in French but rather the confusion in English health care terminology between the US and Canada.

Forget about your MACRA and your MIPS and other acronyms that bewilder and confuse Canadians; we are talking about more common terms

In Canada we talk about population health in the public health sense of maintaining the health of the entire population through preventive measures. Here, well, even those at HIMSS seemed unsure even though it was the phrase de jour  for the second year running.

As Mike Miliard, editor of Healthcare IT News wrote: “Whether looking at it as a big-picture value-based care model (an ACO, a patient-centred medical home), or the nuts-and-bolts needed to manage specific segments of patients (mobile engagement tools, HIE analytics), getting a handle on the concept of population health can be tricky.”

Population health as a proxy for focusing on chronic disease management and tailoring treatment appropriately – well, sure that make sense as that’s the preoccupation with Canadian providers and health policy makers as well. Why didn’t you just say so?

Once we get around terminology, the messages out of HIMSS were more comprehensible.

Physicians remain seriously PO’d with their EHRs and what they are doing to their health and well-being. Even Andy Slavitt, acting director of the Centers for Medicare and Medicaid Services (CMS) admitted as much.

But improvements are promised and leading US physicians acknowledge EHRs are here to stay and that multiple clicks thing to do something as basic as give a flu shot will be corrected soon.

What was much more fascinating in Vegas is how the whole patient engagement field is evolving.

Discussion of patient portals has given way with extreme rapidity to acknowledging virtual care must span a whole range of apps, devices, platforms and wearables. Many hospitals are ahead of their counterparts in Canada in enabling the use of tools such as apps to improve the patient experience.

But despite the growth of the Open Notes movement and the necessary sharing of patient records with the patients themselves, an Accenture survey released during HIMSS was an eye-opener. It showed physicians are becoming less likely to support full sharing of patient records even while patients are requesting same in greater numbers. A conundrum to be addressed, surely?

And then there is the question of just how engaged people really want patients to be.

Dana Lewis, a pioneering patient advocate closed the day at the patient engagement pre-conference symposium by discussing how she hacked her devices to improve management of her type 1 diabetes. And please, she said, call her a person with diabetes not a diabetic because she is not going to let her disease define her.

Fast forward to a panel discussion later in the meeting where consultants and providers discussed innovation in diabetes care  sans patients and using the term ‘diabetic’. As with so much of HIMSS, it struck me that patient engagement is applaudable but please have more patients in the room and avoid viewing them as objects, or heaven forfend, revenue sources.

HIMSS16 SMA Badge [8339409]