#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:
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.
That’s a lot of meaning packed into 34 words:
- “Research”: A scientific field is about research – studying how things work, testing and proving (or disproving).
- “Based upon past achievements”: the field builds on prior findings, hoping to incorporate more and more evidence, so our knowledge becomes more and more comprehensive. The Wikipedia article on Structure has a section about this, “Coherence,” which starts:
One of the aims of science is to find models that will account for as many observations as possible within a coherent framework.
- “That some community acknowledges”: as I said yesterday, “until there’s a paradigm – an agreed view of how things work and what’s important – you can’t have a question that everyone in the field agrees is interesting, right?? That’s how important the paradigm is to a scientific field: it’s an existential question.”
- “For a time”: No knowledge is forever; if it were, we wouldn’t need more scientists, right?
- At my very first paid speech ever, in 2010, I quoted Gilles Frydman, founder of my ACOR patient community and now co-founder of SmartPatients: “All knowledge is in constant beta.” All knowledge is subject to the arrival of new information that says “We were wrong” (though it can sometimes be hard to find a scientist who’ll say that).
- “the foundation for further practice”: Again: as practice progresses, a field builds on knowledge that has been established, adding new findings to the old.
But sometimes as the work proceeds, you reach a point where the evidence no longer fits the theory – findings no longer behave as expected. And oy, is THAT a problem – a big problem – for the scientific community, because their ability to push the limits of knowledge has stalled. No more new findings to “supply the foundation” for further practice (in that direction). No more ability to explain its observations.
And – of great practical importance – the field is no longer able to predict how to get a desired result.
Anomalies: “failures of the current paradigm to take into account observed phenomena”
The Coherence section (of the Wikipedia Structure article) then captures exactly what we’re talking about – both the nature of anomalies and the fact that any discussion like this cannot be imposed from outside; it must be owned by the community:
As a paradigm is stretched to its limits, anomalies — failures of the current paradigm to take into account observed phenomena — accumulate. Their significance is judged by the practitioners of the discipline.
Some anomalies may be dismissed as errors in observation, others as merely requiring small adjustments to the current paradigm that will be clarified in due course. Some anomalies resolve themselves spontaneously, having increased the available depth of insight along the way.
For better or worse, ultimately the decision is owned by the practitioners in the field:
But no matter how great or numerous the anomalies that persist, Kuhn observes, the practicing scientists will not lose faith in the established paradigm until a credible alternative is available; to lose faith in the solvability of the problems would in effect mean ceasing to be a scientist.
This is why it’s essential that we discuss this together. I have no interest in overthrowing science, nor medicine (which saved my life). As I said at the top, I just want us to look at the evidence together. Because any effective change in the culture must, in the end, take root in the culture.
In the next post we’ll begin looking at specific facts in evidence that I assert are anomalies – e-patient stories, where empowered, engaged, activated patients contributed real value to their cases.
Why are these a problem? Why are they “puzzles” to be solved, in Kuhn’s terms? Because some healthcare providers and some policies discourage patient thinking, patient awareness, patient research, patient contributions.
Why does this happen? These providers are well educated people, so the question arises: What belief, what world view – what paradigm – is driving these attitudes and professional practices?
Whatever that world view is, we must identify it, because the cases in evidence – where empowered, engaged patients contributed real value – constitute “failures of that paradigm to take into account these observed phenomena.”
And that, ladies and gentlemen, is a problem.
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