e-Patient Dave

Power to the Patient!

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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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Proposing a new *science* of patient engagement

In three weeks at the Mayo Clinic, as their invited Visiting Professor in Internal Medicine, I’ll be delivering the most fascinating talk of my career. I’ll be formally starting the process of examining whether we must all agree that there’s a hole in the dominant paradigm of how medicine works, and whether we must solve this together by creating a new, scientific approach to patient engagement.

To start, please watch the four minute video below. For convenience, and to make it more searchable, at bottom of this post is a transcript.
Cover of Structure of Scientific Revolutions 50th anniversary edition

To do this I’ll be using the 1962 book that brought the word “paradigm” into popular use: The Structure of Scientific Revolutions, by Thomas Kuhn. His definition of paradigm was much more strict and rigorous than the trendy loose word we throw around today; he studied numerous scientific revolutions (Newton, Copernicus, etc) and identified a regular, repeated structure to the process by which a scientific field takes form and then, sometimes, realizes a revolution is needed.

The process is both scientific and sociological – a fact that annoyed the crap out of scientists who believed that they are solely logical. From Wikipedia:
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