e-Patient Dave

Toward a New Science of Patient Engagement

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Events and travels, winter 2019

It’s been a busy winter. Amid all the Facebook scandals and new government regulation work that’s going on, I thought I’d send an update on travels. Here are some visuals from a recent 17 day, six country, seven speech trip. (Fun facts: nine different hotels, and doing laundry in a Vienna laundromat that only takes instructions from a smartphone app.)

The background image is the HIMSS19 (health IT systems conference) logo repeated over and over and over and over, because that brutal exhausting conference is like that :-), and is the background of everything else.

Counterclockwise from left:

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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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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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Notes for NAM’s Action Collaborative on Clinician Well-Being and Resilience

Infographic from NAM with key statistics on clinician wellbeing
Infographic from NAM with key statistics on clinician wellbeing

I’m participating today as a “consumer/patient” voice in a meeting on clinician burnout, part of a project of the National Academy of Medicine. I was going to be there in person but a bad and contagious coughing cold kept me home, so I’m watching and listening remotely.

Remote participants often don’t get as much chance to speak up, so I’m doing what empowered people do: find another way to get heard.:-)

Burnout is important to me, because I’m deeply grateful to the highly trained people who saved my life 11 years ago, and I want them to have a good life. But look at the statistics in the project’s infographic here. It drives me nuts (and makes me sad) that the doctors and nurses who put in all those years of training, and gained their years of experience, are so often unhappy with their working life.

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American healthcare: a malignant tumor that can’t stop killing its host

As I said recently, I’ve been writing less here for a number of reasons. One is that I’ve been asked to write on other sites. Another, a sobering factor, as that after years of study, I’ve concluded that the American healthcare system has tied itself in a fatal knot. The post shown here, on the Patient Power blog, is an example of both.

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The value of sharing data: What healthcare can learn from oncology

2017 Future Health Index cover
Click to go to the report’s web page

Again this year I was thrilled to be invited by Philips to participate in their Future Health Index project. This is among the most visionary annual healthcare overviews in the world. The full report – a 100 page PDF – is available free here.

Each year they’ve also asked me to submit a post for the project’s blog. Here’s my submission this year, touching on why oncology is ahead of most specialties in this area: the field decided years ago to align for patient benefit!

Let’s all do everything we can to help healthcare achieve its potential! Sharing information is part of that.

The value of sharing data:
What healthcare can learn from oncology

Decade after decade, innovations change the future of care. Microbes, anesthesia, surgery, transfusions, public health, radiology, penicillin, genomics … each development produced a quantum shift in what clinicians can achieve and in patients’ lives.

I wrote an article for the Future Health Index last year, Could data make you live longer?, which lists six different ways I as a patient can be empowered by better data flow. Similarly, it turns out one of medicine’s next great frontiers is not biological but technological: the ability for clinicians to share relevant patient data with others.

In this innovation, oncology is ahead of other specialties: the 2016 Future Health Index report found that 71% of oncologists across 13 countries share patient data electronically, while only 63% of other clinicians do.

Why? What can we learn from this?

A big factor is that oncology as a profession decided nearly a decade ago that electronic data sharing is core to their work, and spoke up about what they need.
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