e-Patient Dave

Toward a New Science of Patient Engagement

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Book review: Augmented Health(care):
the end of the beginning, by Lucien Engelen

This book is so good I don’t know where to start. Just read it. (There’s an introductory 20% discount on the e-book below.)

Except – seriously – don’t read it if you demand a roadmap from here to the future. This is from the future. The image above, of a kid with a telescope, has been in the author’s office since I first met him, but until I was halfway through this book I didn’t understand why.

In Augmented Health(care) Dutch innovator Lucien Engelen of Radboud University Medical Center goes on a tour of the landscape that may strike the unfamiliar as manic or just plain nuts. Don’t trust that reaction – listen. He is unbound by the traditional view but absolutely bound to a future world where health – and care – are augmented such that things actually work.

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Skeptics ask why patients would even WANT their medical images. We asked on Facebook.

No wonder people get tired of fighting to improve social attitudes. This one is so obvious, yet we keep getting asked the same outdated questions. What amazes me, though, is that this time the skeptical scoffing comes from uninformed innovators, not old-timers! Makes me want to bang my head on the desk.

Last week I posted here about my talk at the SIIM conference in DC, including the rousing favorable response from the audience on Twitter. It appears the popularity has aroused scoffing skepticism AGAIN: “What would patients even DO with their images?? They don’t know how to read them…”

Notice how that thinking presumes the only thing a patient could do with the image is try to play doctor!  So I blogged a bunch of the stories patients told me on Facebook in response to my request.  Have a look at the post and the fascinating range of stories people shared. How wrong the skeptics are, when they think a patient is trying to step into the doctor’s shoes. Some do in fact become good enough to spot things like a missed tumor(!) – but in most cases the patient does something that adds to what doctors normally do. Isn’t that interesting? Go read.

 

 

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From Paternal Care to Autonomy and Emancipation (15 minute slidecast)

For the past several years a number of themes have repeatedly arisen in my work that aren’t widely discussed elsewhere, and I’ve wanted to make them available to wider audiences, so I’ve started recording occasional “slidecasts” – I play the slides on my computer and narrate. Here’s the latest. It’s a core topic in rethinking the patient-provider relationship: paternal caring, which is necessary in some situations, vs the increasing shift to patient empowerment, autonomy, and even emancipation – the removal of constraints.

I did this for my head & neck cancer patient friends in New Zealand, whom I met during my fellowship last fall. We’ve kept in touch on their Facebook group. On Thursday two of them, Maureen Jansen and Tammy von Keisenberg, are speaking about “health literacy” – a subject that’s misunderstood far too often, and which is often tied to discussions of whether patients should or can be independent to one extent or another. Food for thought.

Thanks once again to the sponsors and organizers of that fellowship: Spark Revera (New Zealand’s telecomms company, totally into the emerging world of e-health) especially @eHealthDoc Will Reedy MD, and Waitemata District Health Board, especially head & neck cancer surgeon David Grayson MD @Sasanof and its “i3” innovation center headed by Dr. Penny Andrew.

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Flaming dissent on the roles of patients – what’s morally right for us(!), part 1

I keep seeing patterns of thought that I frankly think are pretty benighted. With luck, shedding some light on them will help. This one is so STUCK in darkness that I’ve decided to publish a little series on the subject.

First is this editorial about patients in research. Next will be what happened when a researcher I know became a patient/family member. Then will be how this fits into a century-long timeline of progressing toward patient autonomy … which of course requires a matching increase in patient responsibility.

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Alumni club dinner: How e-patients can help healthcare achieve its potential

After eight years of speeches at conferences, I’ve observed that while medicine achieves incredible miracles that were impossible a generation ago – like saving my sorry life – it still falls short of potential more often than necessary. Lots of people write big fat books about it, but some problems don’t change, which raises the question: what can we tell consumers of the system, patients, that will help them get the best care when they’re in need?

So that’s a new series of speeches I’ll be doing, not just at big conferences but at local meetings in cities and towns, hospitals and community centers. These talks aren’t designed to change the healthcare system much; to the contrary, they’ll empower ordinary people who use the system to help the system do its best.

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