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Democratizing Healthcare

Search Results for: "science of patient engagement"

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“The unfolding science of patient engagement”: foreword in a new book

Photo of the foreword pageIn 2013 I was interviewed during the creation of a book called Person-Centered Care, part of a project called Co-Creating Healthcare produced by Danish firm Sustainia and the German firm DNV GL. It’s a remarkable project – a series of three substantial books, all distributed as free downloads on the project’s site. (They also have print editions, but I don’t see any way to buy one!)

In January they completed the third phase of the project, a series of roundtables in Europe, China and the Americas: The State of Healthcare: From Challenges to Opportunities. I participated in the Washington meeting, and they asked me to write a foreword for the final book, which was released last month.

Because the foreword focuses on the “defining a new science of patient engagement” theme I’ve been writing about, I want to re-post it below.

As you can see by browsing the books on the project site, the whole Co-Creating Healthcare project is amazing in its depth (and the beauty of the book spreads), so I’m just thrilled that for the foreword of the final book, they chose this idea. Thank you!

The unfolding science of patient engagement

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Proposing a science of patient engagement, #3: The role of unexplained observations

Cover of Structure of Scientific Revolutions 50th anniversary edition#3 in a series. Previous entries:

#1: Proposing a new science of patient engagement, including the four minute interview video that defines the need for the project.

#2: The stages of a scientific field: Thomas Kuhn’s framework for how a field becomes a science organized around a paradigm, and then, sometimes, realizes that “anomalies” mean the paradigm is no longer sufficient to serve the field’s needs.

The purpose of this project is to examine whether medicine needs to become more methodical – more scientific – about what we mean by patient engagement, and what factors determine how well it works.

The role of unexplained observations

Science depends on its findings being … dependable! Section 2 of Structure, “The Route to Normal Science,” begins:

In this essay, ‘normal science’ means research firmly based upon one or more past scientific achievements, achievements that some particular scientific community acknowledges for a time as supplying the foundation for its further practice.

Let’s add line breaks and boldface, to spotlight the elements of thought:
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Proposing a science of patient engagement, #2: The stages of a scientific field

Cover of Structure of Scientific Revolutions 50th anniversary editionRevised March 12, adding Hacking’s “structure” passage.

This is #2 in a new series “Proposing a new science of patient engagement,” using the landmark 1962 book The Structure of Scientific Revolutions by Thomas Kuhn as its framework. If you haven’t read the first entry, please do, including its dozens of comments, which have links to valuable ideas and resources.
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In an upcoming post I’ll lay out briefly why it seems this project is needed. I say “seems” intentionally; this must be a shared exploration. As I said in #1,

My goal is … to have science move forward methodically in its thinking. Maybe we need a new science – a new way of understanding what needs to be measured and optimized – or maybe we don’t. I just ask that we examine the evidence together.

This post will lay out, briefly, the stages Structure describes for the progression of science. I’m doing this first because that framework provides the context for my assertion that we have a problem – a scientific problem in the field of medicine – that may require formally (and rigorously) changing our conception of who is capable of what in the patient-clinician relationship.

As you’ll see, a shared conception of how things work is exactly what a paradigm involves.

Kuhn’s view of the progression of a science

From Ian Hacking’s widely praised introduction to the 50th anniversary edition of Structure:

Structure and revolution are rightly put up front in the book’s title. Kuhn thought not only that there are scientific revolutions but also that they have a structure. …

Here is the sequence: (1) normal science…; (2) puzzle-solving; (3) paradigm…; (4) anomaly… (5) crisis and (6) revolution, establishing a new paradigm.

Going a bit deeper on some of Kuhn’s core concepts:
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Medicine is flipping. Join Eric Topol and me at MedCity ENGAGE to discuss

Click to register with FOUR hundred dollars off (better price than early-bird) with promotion code EPDAVE
Click to register with FOUR hundred dollars off using promotion code EPDAVE.

If you’re, frankly, a visionary who sees that the power structure in medicine is flipping, I urge you to come to La Jolla next month.

MedCity News, one of the best health IT publishers, is hosting its annual “ENGAGE” conference. The mighty Eric Topol is speaking the first morning, and I’m doing the closing keynote on day 2. (I call him mighty because that’s what I think about his vision. So sue me.:-)

Register with promotion code SpeakerReferral and get $500 off, so your cost is only $395. That’s a heck of a good price for this list of speakers – even better than the $300 early-bird discount shown above.

Here’s why this event is unusual: [Read more…]

Books and publications

Part of creating culture change is to publish documents, professional and mass-market, that spread the word about the new view. In addition to my speeches and videos, I do this through articles and books.

Books

For more information, visit the Books page.

Book chapters written and co-authored

Articles in peer reviewed journals

Search my publications and citations on Google Scholar or PubMed

Articles in health-related publications and blogs

See also the Media page for interviews and articles in mainstream media (Washington Post, USA Today, Time, etc) covering my thoughts on contemporary topics.

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Beyond Empowerment: Patients, Paradigms, and Social Movements

It’s time to move beyond empowerment and engagement, and get to the deeper issues.

For 18 months it’s been increasingly clear that the nature of this work – at least mine – has moved beyond surviving cancer (though that’s great), beyond “Gimme my DaM data” (though that’s true). It’s time to examine the core beliefs that hold medicine back from achieving its potential – its mistaken conceptions about what patients can do and should be supported in doing.

So when Susan Carr, editor of the excellent Patient Safety & Quality Healthcare, asked last summer if we should do another piece, I proposed that we pick up where I left off in 2015 as Mayo’s Visiting Professor: let’s examine whether it’s time to formally examine “the paradigm of patient”; to rigorously ask whether establishment medicine’s conception of what “patient” means – especially what patients are capable of, and should be empowered to achieve – needs to be updated. If we get that wrong, then business and science and policy can’t possibly get it right.

The resulting interview is here – they made it their cover story! You can jump to that link, but if you have a moment, I’d like to say more about its background, and why this is important.

Problems in a paradigm are not to be taken lightly.

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