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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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“A new scientific truth…”

Max Planck, 1918 Nobel laureate
Max Planck, 1918 Nobel laureate (Wikipedia)

Sometimes patients complain when they discover a doctor’s views are out of date, even in the face of evidence. Well, that’s not new: here’s a quote from the guy who won the Nobel Prize in physics, in 1918:

“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
~ Max Planck (Wikipedia)

This quote was cited by Thomas Kuhn in his incredibly important book The Structure of Scientific Revolutions, which recounts the tremendous social barriers to adopting new thoughts. Even the concept of bacteria subjected physicians to ridicule: “Pus is caused by invisible evil creatures? That’s witchcraft!” And in cancer, the importance of angiogenesis (cancer’s ability to grow new blood vessels as its fuel supply) was ridiculed for decades. Same for the bacteria that causes ulcers, and on and on.

Those of us engaged in changing culture – the culture of medicine – often experience this. The establishment “knows it’s right” and disses people whose experience runs counter to it; Kuhn says science is, amazingly, a fashion industry, where if you don’t wear the right glasses or shoes, you’re scorned. (The irony, of course, is that the scientific community is supposed to be evidence-based, and Kuhn established forty years ago that it’s not.)

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What I’m doing now

This is my public declaration of priorities, as inspired by the /now page movement started by Derek Sivers. I learned about this (as with so many things) from Susannah Fox.

Speaking:

I’m an evangelist for a new view of health and care, centered around patient autonomy and empowered partnerships with enlightened medical professionals who welcome collaboration. I spread the word through speeches that connect with different audiences’ varying perspectives, as well as through my writings.

I’m thrilled that live conferences are resuming! Zoom meetings are just not the same, but I continue to speak virtually (recent review) as well.

Patient data access:

I’m a co-founder and (now retiring) co-chair of the HL7 Patient Empowerment workgroup, specifically focusing on expressing the voice of the patient in the FHIR health data standard. (Learn what it is and why it’s important.) As with everything in the HL7 standards organization, all meetings and proceedings are fully open and transparent (though sometimes quite nerdy); you’re welcome to attend. The workgroup’s home page is bit.ly/hl7patients and weekly calls are at 1pm ET Thursday; projects have lots going on too, and are happy to have new participating members.

I’m an avid participant in the semi-annual FHIR DevDays conferences, as leader of its Patient Track.

My latest personal health issue:

After a failed cataract operation in 2020 I acquired glaucoma in 2021 and have lost 30% of the vision in my left eye. I’ve been immensely frustrated at how ophthalmology is not participatory yet and am working on it. First steps: (1) joined the FitEyes e-patient community, and (2) started measuring my eye pressure at home, instead of only at occasional doctor visits – same as people do with blood pressure, bathroom scales, baby thermometers etc. I’m using the iCare Home tonometer. You can’t manage what you can’t measure; knowledge is power.

Thinking:

One motto I’ve acquired is “If you live long enough, things change!” This is a huge factor in my continuing work on changing the culture of healthcare: for care to achieve its potential we need to understand the assumptions that underlie how health and care are structured today.

Current fascination: “The evolution of who knows what.” Did you know there’s only been one century in all of human history where doctors actually knew what they were doing, and patients did not and could not? That century is over, and it changes how healthcare might achieve its potential.

Reading:

I listen to audio books and podcasts constantly, including four themes beyond news:

  • The nature of knowledge, science, and human thought: The Structure of Scientific Revolutions, Superforecasting, Thinking Fast & Slow, Leadership on the Line, Sapiens, Homo Deus …
  • Healthcare’s evolution and limitations: The Emperor of All Maladies, How Doctors Think, The Patient Will See You Now, The Anatomy of Hope, The Gene, The Hospital: Life, Death, and Dollars in a Small American Town, An American Sickness…
  • How business methods have changed since my early-career days in product management: Blitzscaling, The Effortless Experience, Radical Focus, Platform Revolution …
  • Anti-racist self-education: How the South Won the Civil War, The Mismeasure of Man, How to Be an Anti-Racist, Why I’m No Longer Talking to White People about Race…

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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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Patient Engagement and Empowerment: A Culture War Begins (lecture at MITRE)

A Culture War Begins - title slideI’m starting 2016 with a series of posts that lay out “the arriving future” of health and care. Previous entries:

Technological advances are making new things possible, and our deepening conception of what medicine is about (and how best to achieve care) are changing our thinking about the nature of the work. We are truly shifting from “the doctor knows everything that needs to be known” to patients as potentially capable partners.

This is real culture change. Predictably, the establishment fights back: some people don’t believe it, some just don’t like change (especially change in their work), and some don’t like what they perceive to be a challenge to their authority.

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It’s time to adopt a good working definition of empowerment.

Source: dave.pt/worldbankempowerment1
Source: dave.pt/worldbankempowerment1

A major theme of my work last year was that it’s time to create a science of patient engagement (see blog posts) – a rigorous inquiry into what patient engagement is, what factors (parameters) increase it, which ones diminish it, develop some hypotheses that researchers can test. This was the theme of my visit to the Mayo Clinic as Visiting Professor in Internal Medicine in March and my tenure as NEHI’s Patient Engagement Fellow.

A science needs practical definitions. The Structure of Scientific Revolutions notes that until a field has an agreement on what a concept means, the practitioners in the field literally have nothing in common to talk about. I’ve seen that myself, when people talk about empowerment but the field goes nowhere.

It’s time for definitions.

Fortunately, a useful definition of empowerment exists.

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