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.

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