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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“Patients are the most underused resource” – Warner Slack, 1933-2018

Teaching at Harvard Medical School, 2012 (Photo: Paul Levy)

A great, great man has passed away – a man I quote in half my speeches.  I was privileged to know him enough to feel grateful about it, and especially grateful to have been able to visit him a few times in his final weeks. It’s Warner Slack, the one who famously said in the 1970s that patients are the most underutilized resource in healthcare.

There’s so much to say about him, but I’ll mostly let others speak, partly because it’s hard to know what to add. Here are a few things.
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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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Long-term Survivorship Care after Cancer: Report from the National Academies

Email subscribers, to see the multimedia below, you may need to click the headline to view this online.

Last July I participated in a workshop on life after cancer at the National Academies of Sciences, Engineering, and Medicine in Washington. They’ve just published the final report, Long-term Survivorship Care after Cancer Treatment: Proceedings of a Workshop. It’s a free 160 page PDF.

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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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