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.
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:
Kuhn’s insistence that a paradigm shift was a mélange of sociology, enthusiasm and scientific promise, but not a logically determinate procedure, caused an uproar in reaction to his work.
In the days between now and Mayo I’ll post several items that I hope will be helpful both to people who are students of medicine and to ordinary folks, so we can have a common basis for discussion. If this initiative succeeds, the process will take years, as it always does. (Kuhn says some revolutions take a century.)
My goal is not to be in a hurry, it’s to get it right – 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.
Here’s an index of the posts in the series:
#1: Proposing a new science of patient engagement (this post)
#2: The stages of a scientific field
#3: The role of unexplained observations
#4: “The unfolding science of patient engagement”: foreword in a new book
Below is the transcript of the four minute video above.
_______________
This is something that’s been coming for years, I think – there are a lot of people who’ve been saying since the last century, since the late 20th century, that patients are more able to contribute now to medicine than in the past. And it’s taken a long time for us to figure out what’s actually going on here, given that a patient like me has no medical training at all.
It turns out that the real question is, who is capable of bringing value to a medical situation? There’s always health maintenance, of course, where only the patient takes care of themselves. But when trouble hits, how can it be that people without medical training can add to the knowledge that physicians have, with all their training?
I don’t take this lightly… I’m not somebody who says “Oo, let’s all think lovely thoughts about patients and the world will get better.” I’m functional, I have an engineering mind – I want to know what’s happening. So I’ve been advocating, since some colleagues, including my PCP, formed the Society for Participatory Medicine – their
symbol is a handshake – in 2009, I’ve made a career literally out of speaking on what’s happening, what’s changing, in medicine.
A number of important precedents… in 2012 I gave a talk to a Medical Library Association chapter here at Mayo, and Dr Jeff Reznick of the National Library of Medicine told me that they now are capturing several patient blogs into the History of Medicine division at the NLM. The Institute of Medicine in 2012 said that the future of healthcare … requires “patient/clinician partnerships.” And they specifically said “Empowered, engaged patients.”
Anyway, after years of doing this, all of a sudden a couple of months ago I got an email that pretty much knocked me out of my seat – where the Chiefs [chief residents] invited me to be Visiting Professor in Internal Medicine.
Of course, me being me… evangelists don’t stop at an offer like that – I immediately said, “Okay, good – let’s up the ante – I’d like to talk about what’s actually changing in medicine – sit down with you folks and really pull it apart – because I actually think – there’s a famous book, The Structure of Scientific Revolutions, first published in 1962, where he talks about, looks at the history of various sciences. Every science develops a paradigm; until there’s a paradigm there is no science, really, because you don’t have a shared view of how things work, that you can research.
Then there comes a time in every science, sooner or later, where you get a bunch of what he calls “anomalies” that force you to say, “How could this be happening if the world works the way we think it does??”
And that leads to crisis, and leads to an evolution of the science. I think that’s what we have in medicine – we have numerous cases now, where activated, thinking patients bring information to the table that improves outcomes.
So I responded by inviting the chiefs to have a multi-month dialog about this. Because I think we’re in a position to propose a new science of patient engagement.
The second post in the series went live today – it describes the stages a science goes through, according to the book. https://www.epatientdave.com/2015/03/11/proposing-a-science-of-patient-engagement-the-stages-of-a-scientific-field/
I took a quick look at some of the past formal research regarding patient engagement. See, for example, this google scholar search:
https://scholar.google.com/scholar?q=patient+engagement&btnG=&hl=en&as_sdt=0%2C5
Looking forward to your thoughts on how to summarize how these various research efforts fit together.
Larry
Larry,
> Looking forward to your thoughts on how to summarize how these various research efforts fit together.
I just skimmed that Google Scholar search you posted, and the first thing that comes to mind is “It’s not ME who should summarize how they fit together. The whole medical community needs to, because wherever we end up with this (years from now) the COMMUNITY needs to own any answers.”
That’s one big thing that emerges from all the sciences Kuhn reviews. In his rigorous limited definition, “paradigm” is a set of formal agreements on how things work, owned by the community, and until the community changes its mind, the paradigm hasn’t changed.
There’s more on this (including some controversy about it) in the Wikipedia discussion of Kuhn’s opinion on scientific progress.
I want to be careful, though, not to tie the whole freakin’ idea of patient engagement to whether one likes or doesn’t like this book. :-) As I said, the book is the framework I’ll use, but reality is what it is, whether or not we know why.
Great – thanks!
Dave,
I fully agree we need to move beyond the fuzzy stuff to get to the next level. As you know I do a lot of work with the pharmaceutical industry (e.g. http://www.nature.com/nbt/journal/v33/n2/full/nbt.3145.html) and while it’s easy to put photos of patients in your corporate office, climbing the rungs of Arnstein’s ladder remains a more difficult aim to achieve.
Small-scale market research or even bringing in “expert patients” as motivational speakers can, to a highly regulated industry without a muscle memory for speaking directly with patients *seem* like it is really “engaging”, but as Arnstein’s ladder shows us this is in fact still firmly in the realm of tokenism. Where industry can learn from PCORI and indeed the BMJ is in putting patients in a position of *power* – the same ability to make decisions on grants or manuscripts as a clinician or researcher.
Such face-to-face work though will always rely on a small group of articulate individuals – how then to engage a larger and more representative group? That’s where the new science of patient engagement comes to play. Say you’re designing a new clinical trial – the status quo would be to do the design entirely with regulators, businesspeople, statisticians, doctors, and trialists. Many in industry would give themselves a firm pat on the back for speaking with a research head of a patient non-profit, who may not even have the disease.
At the next level up perhaps convene a patient advisor board (to compare and contrast with the physician one). Above that perhaps a targeted survey of patients matching the inclusion / exclusion criteria of the trial and with a robust enough sample size to perform statistical analysis, simulations, and look for interesting subgroups. Through open text fields it might be possible to brainstorm possible solutions to some of the challenges in a trial or illuminate blindspots.
Climbing the ladder still further we might look more towards partnership – a standing patient advisory board not just consulted but actually responsible for something (appropriately remunerated and resourced) – perhaps to craft the informed consent document. At higher levels still, moving towards citizen power we will know if we’re at the higher ends of the range if we can answer yes to the question: “If patients wanted to, could they ensure this trial ended right now?”
Now, not every one of these steps is appropriate or possible for every situation, and like I say, many companies struggle with internal hurdles like regulatory and safety approval to do even basic consultation. My own group has been working on a scientific approach of the survey-based variety described above (e.g. http://www.trialsjournal.com/content/15/1/172) because it’s a form of data that the very numbers-driven trialists can relate to – you need N=400 collected in a robust way to get them to change their inclusion criteria or write a protocol amendment.
Of course not all of this will be able to go on in the public and peer-reviewed sphere, but we’ll ensure we put out as much of it as we can, and open access too. Then we’ll need to go much further back in the development cycle and ensure patients are in the driving seat for which molecules are taken forward for trial development in the first place and other key questions like which outcome measures are used, maybe even which investment decisions reflect their research agenda.
I will trust people like you to keep us honest – when are we doing ra-ra self-congratulatory tokenism and when are we actually helping patients have a powerful decision-making role, and who is dressing up one as the other?
One thing’s for sure – this will take investment. You won’t see “10x ROI” on the first implementation. It’s going to take commitment and perseverance and iteration, just as with innovating any new product or design. And as we develop this science and it becomes utterly normal and mundane to engage at scale with the ultimate stakeholders of healthcare, one day you and I too will be the entrenched dinosaurs who get disrupted by a next generation with ideas far more radical than what we think of as the cutting edge.
Like every field there will be textbooks and courses and conferences and scandals and breakthroughs and fallow decades of toil and things never moving as fast as we desire – but the goal is clear in my mind and I look forward to heading there with you.
Best wishes
Paul Wicks
VP of Innovation
PatientsLikeMe
{Edited March 10 – fixed broken link to image search]
What a fabulous contribution, Paul! (I took the liberty of breaking up your longer paragraphs – my eyes aren’t as clever as you meaty-academic gray-page wizards!:-))
Thanks for reminding us of Arnstein’s Ladder of Citizen Participation – a 1969 chestnut! For those who don’t know it, here’s a google image search for it and here’s the full text, posted outside the journal’s site.
Fittingly, it appears on Wikipedia on the (non-medical) page titled “Participation (Decision making)”! It’s in the section Classifying participation:
I like the ladder metaphor, and I get the “redistribution of power” issue – otoh, to me that’s specific to patient empowerment, which isn’t the same (in my view) as patient engagement. Clearly, it seems, one of the first tasks to be tackled will be definitions of terms.
I have so much to say on this, and I hope a ton of good discussion will happen here – this is a better start than I imagined!
Love Paul’s comments and appreciate the link to Arnstein’s Ladder Dave. I couldn’t agree more that we need ‘the science’ of PE in order to support sustainability.
In Massachusetts where I work, Patient and Family Councils are mandated for all hospitals. Is it meaningful? I believe it gets more meaningful every day because patients ARE participating.
In the meantime, while the science is being developed and researched, what I tell those who are afraid or reluctant to engage patients is “Just Do It” (thank you Nike) and work out the kinks as you go. The results are always beneficial for patients and providers.
We will never achieve optimal outcomes, high quality or compassionate care without patients contributing and participating in meaningful ways. So, ‘Just Do It’ (and perhaps observational research studies on those who are doing it would be of value.)
Great to hear from you, Lori! Remember that plane flight to NPSF when we discovered we were both going there from NH?
The think I want to point to in this initiative is that we want to figure out what factors make a difference, and how do you tweak those “knobs”? Until we get to that point, it’s not a science, and nobody can design a solution to a problem – it’s more or less guesswork, and no two practitioners are likely to view any given issue with the same approach.
As these posts continue I’ll try to open discussion on issues like that. I mean, really, CAN we become scientific and methodical in doing the work you describe? Can we develop hypotheses and test them?
Factors: patients who engage in shared decision-making models with providers
Outcome measure: their satisfaction ratings and ratings of quality of life after their treatment, test or procedure
Factor: patient participation in Patient Family Advisory Councils (PFACs)
Outcome measure: Hospital HCAHPS score, patient ratings of healthcare facility culture and patient engagement and participation.
Factors: Patients are encouraged,empowered to ask/insist their HCP’s to wash their hands on each encounter
Outcome measure: HAI rates on that unit or by provider
Factors: Patients share their powerful stories with healthcare leaders
Outcome measures: Change in attitudes and culture as measured by surveys.
I could go on and on and on. YES, many factors make a difference, but we are not measuring them.
SOLUTIONS should be patient-generated. But first we have to give them permission, authority, and the power to engage.
Lori, this is a great start on a list of things for researchers to analyze.
Here’s what I want to get down to: if we had an “event microscope,” that could watch an improvement happen or a problem happen or a problem be prevented, etc, etc, and see HOW that takes place, what would it see in each of these cases?
The simplest example seems to be hand washing.
– Some unknown number of workers walk into a patient’s room with germs, potentially lethal ones
– Hand washing has been shown (plenty of evidence) to reduce patient infections and deaths
– Patient vigilance and SPEAKING UP has been shown to improve hand washing and thus reduce infections. THAT’s VALUE ARISING FROM PATIENT & FAMILY ENGAGEMENT.
– But there are INHIBITORS:
—Worker ignorance (poor training & supervision) or busy-ness can inhibit hand washing
—Social problems can inhibit patients from speaking up
—Social problems can inhibit workers from *accepting* patient reminders
So there we have a mechanism – a pathway, as clear as a drug’s pathway of action – for identifying exactly how patient and family engagement can create value, and for identifying the MECHANISM of its action being blocked.
See, I hope to become as rigorously methodical and scientific about HOW patient engagement improves healthcare as chemists and biologists are about understanding the MECHANISM of how a drug works.
If we can do that, everyone will have a clearer picture of specifically why patient engagement has value, and is thus worth funding and studying and enforcing, every bit as much as a drug protocol is.
(Leonard Kish, I’m lookin’ at you here – this is getting at the “active ingredient of the blockbuster drug” topic we’ve discussed!)
As a matter of fact, you’re right, I do think about these things as having an activation energy, like a catalyst in a reaction, and there are network effects in how they can spread. I think the Fogg Behavior Model gets at it (talks about motivation and ability-the ease with which behavior can be done-both of these could be seen as proxies for energy, and are activated by a trigger).
http://www.behaviormodel.org/
I wrote about some of this a while back. It nicely fits with the revolution theme:
https://leonardkish.wordpress.com/2011/02/17/43202887/
A few recurring themes:
1. the difficulty level in performing a task
2. triggers
3. motivations
4. network effects
5. Continuous learning about what works, the efficacy of activities and decisions.
6. Context, connected with motivations and abilities, includes social, economic, educational, technological, geographic and several more.
7. Goal and incentive alignment
8….and more
Absolutely, Leonard! Thanks for getting this logged here.
In my view behavior change is a “how” aspect of patient engagement – not unlike how you engineer solutions once you KNOW the science that makes something possible.
A real malfunction happens, in my view, when someone tries something unsuccessfully and concludes that it’s not possible. This is exactly why I say we need to firm up the science – rigorously – distinct from the practical issues of how to get it done.
In fact, if we haven’t methodically demonstrated that a pathway to value exists, how can we justify investing in researching HOW to make it happen?
Particularly when you are starting a new science, so many of the variables are uncontrolled, it’s hard to make progress and easy to dismiss as not possible. How long did mankind try to fly before the Wright brothers? Now aviation and aeronautics are sciences.
Of course this is tricky because it’s about motivation and making choices, but that’s also just a matter of understanding the variables.
For that, we need a lot more of this, how it helps, how it hurts, and how much it costs, not blind recommendations: http://www.nytimes.com/2015/01/27/upshot/can-this-treatment-help-me-theres-a-statistic-for-that.html
Thanks to Carla Berg for that last NYTimes link, BTW.
Dave:
The posting of your new science is very effective. It’s clear, simple, and direct. I love the building from past works that span over 50 years. Your efforts to be open, non-confrontational, and build upon the foundations of fact, paradigm, and collaboration is excellent.
Glad you are on this mission and are here to say “you are not in a rush”. You will work to build it correctly.
Best
Dave
Thanks, Dave – here’s hoping it continues to be clear and direct – it ain’t exactly trivial to discuss the history of sciences (plural) from Aristotle looking at pendulums up through Einstein and beyond. :) Fortunately the *structure* of revolutions doesn’t require understanding calculus or quantum mechanics!
Dave,
I was just thinking about this question today while reading this excellent editorial (Fang (2011) Reductionistic and Holistic Science, INFECTION AND IMMUNITY, Apr. 2011, p. 1401–1404) contrasting this atomic-level view of things with a more holistic view. Worth reading if only because it contains this quote:
As Douglas Adams said, “If you try and take a cat apart to see how it works, the first thing you have on your hands is a non-working cat”
I’m hoping it’s not paywalled – http://iai.asm.org/content/79/4/1401.full
Paul
It’s not paywalled, and it starts with this Richard Dawkins quote:
“Reductionism is one of those things, like sin, that is only mentioned by people who are against it.”
Not entirely sure what he means by that. :)
What’s your view on this? Are you suggesting we’re being reductionistic, vs systems-thinking? That would be the LAST thing on my mind – I want to know how the cat works inside, without breaking it. :)
I would propose we need to see a ground-up series of atoms being constructed (all conferences are “patients included”) as well as a top-down series of themes, motivations, drives from respected authorities (FDA, NIH, Pharma, medical associations) that engagement is the right thing to do and be invested in, but that we need to think about the “systems biology” of engagement e.g. think about how these things interact…
Ah, so your noting of that article is to remind us NOT to dismantle the cat and lose sight of its integrity, whilst studying its ducts and calcium channels and such.
I agree, and I suspect that will come naturally since the entire motivation for this inquiry is to have things work out better (in relatively real time) for both patients and providers. In fact that ought to be a constant reminder to ourselves, yes? “Remember, the only thing we care about is figuring out why some things work out better than others.”
excellent post and comments! Will your preso be live streamed Dave? would like to watch you delivering it and inform your Greek fans!
It’s being recorded, Kathi, but not live streamed.
Excellent summary, Dave, of something I think those of us working on partnership (whether we are patients or professionals) are all feeling–the need for more evidence.
I recently started a new position at QRC Stockholm here in Sweden, with the aim to support the development of partnership in quality registries in particular and in health care in general. We are brainstorming about what it would mean to actually research patient-professional partnership, and reflected on how easy it is to say that including patients is the right thing to do, but do we actually know the most effective way to do it? When is an advisory board the best way to collaborate, and when is service design a more appropriate and effective approach? Are having two patients on a board really better than having one? Or is three optimal? You get the picture. If we want to move from rhetoric to action, we need to measure and evaluate what we’re doing.
One thing I would like to contribute to the puzzle is a framework that I am using to talk about patient-professional partnership. It’s on page 6 of this report (http://qrcstockholm.se/wp-content/uploads/2015/02/Patient-professional-partnership-examples-best-practices-and-recommandations.pdf) and my aim is to give us a more precise mental model of what we talk about when we talk about partnership. It’s been really helpful as a tool for dialogue both for professionals and patients. I look forward to hearing more about what comes out of the dialogue.
That’s an intriguing grid, Cristin. One of the things we’ll need to list is all the different models like this of WHERE engagement can show up! Another is Jessie Gruman’s engagement framework, described in 2010 speech at ICSI, listing 43 actions patients must take, grouped into 10 categories:
17 months later e-patients.net proposed another level:
11. Design and create a safe, decent, patient centered healthcare system.
This list is all categories of activity – your grid seems to sort them by location and phase of project, yes?
What’s represented by the two-way arrows pointing down to “Parity”?
My grid does sort them into where they happen, and was created more to help health care professionals, who still most often hold the “formulation privilege” (an excellent phrase I learned from my friend Pär Höglund), i.e. they are the ones who decide when, where and who to invite in to partner into health care improvement, research, policy. I wanted to create a matrix that would let them see that patient engagement is more than patients participating in their own care or filling out surveys, and to encourage them to enable it on many levels and many phases in order to bring about that paradigm shift/culture change that we’re all talking about.
The bar on the bottom was my attempt to begin to capture which factors need to be present in order for partnership to be authentic and effective, regardless of where on the matrix it is happening. It’s like the foundation. These factors, for me, all seem to relate to the concept of Parity: parity in presence (numbers and strength of voice), support, opportunity for leadership, compensation (not only financial, but that is definitely part of it), preparation, training, and more. The report describes all the factors in more detail. I also include some cutting edge examples, and you and the S4PM are in there.
Dave,
The inhibitors have been studied. Have you read about positive deviance?
But I don’t hear people talking enough about the collision between the business model of health care and the ‘high touch’ care that we have lost to technology and fee-for-service care. Humans, especially sick ones need contact, caring, compassion, ease from their suffering, care takers taking time to DO quality work, to actively listen to them and their symptoms, meet their basic needs along with their medical needs, and time to complete comprehensive patient assessments. Time to do quality work, not quantity.
Honestly, the more I do this work, the more I realize that the solutions are really so simple. But they take time, and that’s what is not valued or paid for. These simple things are what I believe are the MECHANISMS of the action being blocked. In the business of health care, we have lost sight of them and their importance.
Speaking as a (old) former maternity nurse, we have a lot to learn from how the maternity model of care got way off track, and look what happened! C-section rates of 50%, maternal and infant mortality rates increasing. Now that we are backing off the technology, supporting the midwifery and dhoula model of care (high touch), we are making some progress on improved outcomes. Well informed,evidence-based, shared decision making takes TIME; the holy grail of high quality care.
Kia ora Dave – I’ll be interested in the further development of an ontology for the science of patient engagement http://www.symplur.com/topic/patient-engagement/
Hi David! And for those who don’t know, could you explain in layman’s terms what an ontology is?
My understanding Dave is it is a way of categorising all things relating to the subject eg patient experience with the purpose of promoting widespread knowledge – a worthy participatory aim! http://www.quora.com/How-can-I-easily-explain-the-word-ontology
This is a wonderful initiative, and I wish you the best of luck in getting the paradigm shifted!
I would like to propose that your group also considers changing the term “patient engagement”. The word “patient” means “a person receiving or registered to receive medical treatment”. But in reality, the paradigm shift should enable individuals to be empowered and motivated to take responsibility for their own health before they ever become “patients.”
So I propose that the paradigm shift include a new term for “patient” to take it out of the medical setting – it will help reinforce the need for consumers to embrace risk reductive lifestyles. I’ve seen the term ‘consumer health engagement” in some articles on the subject – perhaps that could be a placeholder until a better term is determined. :-)
Hi, Eva – good to meet you.
What you propose – rethinking the very essence of “patient” vs “person” and “healthcare” vs “health” and “care,” etc etc etc – is something that many many people have proposed and debated at length, and may in fact emerge as a core issue if we proceed with this discussion.
I’ve learned more (even in the past week) about Kuhn’s work, and it’s becoming clear that he didn’t just mean science rethinking (for instance) whether Earth is the center of the solar system, though that obviously was a revolution. He was talking about something much more fundamental – he meant what kind of objects exist in the concepts a science deals with. That sounds consistent with what you mean, right?
When a paradigm truly changes, he says, you can’t even compare the old concept with the new one – they’re “incommensurable,” he says. That’s how fundamental and deep the change is. (Hard to wrap the mind around that.)
For instance, the whole process started for him when as a student he learned about Aristotle’s view of motion, which by today’s standards seems ridiculous: to Aristotle, the “motion” of the sun setting included that it changed colors. From a Scientific American blog post at the 50th anniversary of Structure:
Then, importantly:
See, it’s not just a different point of view – there’s no comparison in the most fundamental conception of what’s even being thought of.
So this is really challenging. I suspect that in order to talk about how “patient engagement” works, we’ll need to be quite clear about what the mental construct “patient” means, because we are in fact trying to explore whether this “patient” thing can contribute more than medicine usually imagines possible.
On the one hand that could be good – empowering, etc. But on the other hand, I fear that we can too easily get all wrapped around the axle, contemplating the “patient’s navel,” and never get anywhere useful with it.
But that in turn is why I want this to be a group discussion, owned by the community.
(All, if you received the previous comment by email, I apologize, but it had lots of typos in it – please come online to read the fixed version.)
Very interesting perspective, Dave! You are right about your observation – “I’ve learned more (even in the past week) about Kuhn’s work, and it’s becoming clear that he didn’t just mean science rethinking (for instance) whether Earth is the center of the solar system, though that obviously was a revolution. He was talking about something much more fundamental – he meant what kind of objects exist in the concepts a science deals with. That sounds consistent with what you mean, right? Yes, it IS what I mean, because the PERSON becomes the center of the solar system, not just the PATIENT! And being a patient is only one of the activities needed for a person to take charge of their health.
Looking forward to your continued posts and progress!
Dave, I wonder if you’ve ever come across Sir Muir Gray? Here he is talking about a paradigm shift in medicine, heavily citing Kuhne at the Oxford Evidence Live! conference that will be held again in April this year (https://www.youtube.com/watch?v=uTSbqJDfq-I) and here he is having another crack at the paradigms: https://www.youtube.com/watch?v=UQqI4LC40YI
Best wishes
Paul
Paul, I’ve just started watching the first of those Sir Muir videos you cited, and BOY does he have a different interpretation of Kuhn and “paradigm” than Kuhn himself expressed. We need to get this sorted out before we go much further.
From what I’ve read in the past week, Kuhn was so mad about how others interpreted (and twisted) his ideas that in his later years he would discuss two Kuhns. Here’s a footnote to Ian Hacking’s introduction to the 50th anniversary edition:
The footnote followed this, referring to Kuhn’s own postscript in the 1969 edition:
and
Well! What are we to do, if a central word is widely understood differently than its rigorous original meaning??
I think what we do is remember our purpose. Our purpose here is to flush out of the bushes any unrecognized assumptions about how the world works, particularly assumptions that are no longer adequate to predict what works in practice.
That’s what Kuhn’s book was about, and it’s very different from the contemporary use Sir Muir talks about, e.g. shifting from “healthcare is free” to “Archie Cochran – effectiveness and efficiency.”
This can be a very deep rat-hole to dive down into, and I don’t think we need to, here – I’m just noting that we’ll have to be very careful to specify exactly the nature of THIS inquiry, so we don’t talk at cross purposes.
Last night I posted a version of this comment that had a code typo, so most of it didn’t display. So I’ll erase that and paste it in again, here. Also, I made some important wording tweaks.
If you’re getting comments via email I fear the coding might make this hard to read – if so, please come online to read it, formatted, starting with Paul’s comment yesterday: https://www.epatientdave.com/2015/03/03/proposing-a-new-science-of-patient-engagement/comment-page-1/#comment-1040536
__________
Paul, I’ve just started watching the first of those Sir Muir videos you cited, and it seems to me he has a different interpretation of Kuhn and “paradigm” than Kuhn himself expressed. We need to get this sorted out before we go much further. (I wonder if we could beg him to come join this.)
From what I’ve read in the past week, Kuhn was so mad about how others interpreted (and twisted) his ideas that in his later years he would discuss two Kuhns. Here’s a footnote to Ian Hacking’s introduction to the 50th anniversary edition:
The footnote followed this, referring to Kuhn’s own postscript in the 1969 edition:
and
Well! What are we to do, if a word that’s central to our work is widely understood differently than its rigorous original meaning??
I think what we do is remember our purpose. Our purpose here is to flush out of the bushes any unrecognized assumptions about how the world works (specifically in medicine), particularly assumptions that are no longer adequate to predict what works in practice.
That’s what Kuhn’s book was about, and it’s very different from the contemporary use Sir Muir talks about, e.g. shifting from the policy approach that “healthcare is free” to the health policy guided by “effectiveness and efficiency.” That’s a very different meaning of paradigm than Kuhn’s “paradigm as shared example.” (I think… but do other Kuhn readers agree??)
This can be a deep rat-hole to dive down into, and I don’t think we need to, here – I’m just noting that we’ll have to be very careful to specify exactly the nature of THIS inquiry, so we don’t talk at cross purposes.
Hm, pondering – deep stuff –
In that comment I said “it seems to me he has a different interpretation of Kuhn and “paradigm” than Kuhn himself expressed.” Not so sure, now. This is tricky, but in a good way.
In a side conversation with a colleague, we realized: Maybe he didn’t mean that “free healthcare” is itself a paradigm, but that the term is shorthand for a whole way of looking at lots of things. When you switch from that world view to, as he said, “healthcare should be efficient,” then everyone’s roles and responsibilities shift.
I’m gonna see if I can drag him over here to speak for himself. Wish me luck. :)
Yes, I got to meet Sir Muir in 2011 at the launch (at BMJ House) of his then-new book with Gerd Gigerenzer, Better Doctors, Better Patients, Better Decisions. But I didn’t know he got all Kuhnian – thanks – I’ll watch when I get off the plane.
Sounds like I wish I could be at that event! Are you going?
Hi Dave, I sure will! http://evidencelive.org/programme/
I’ll be talking about how the Internet is terrible and we should turn it off. Or something.
Paul
Interesting conversation!
Dave, you know this is a subject close to my heart for over 25 years. So, I’m sure you won’t be surprised if I have an issue with what you are proposing, while being deeply appreciative of the great effort to move the ball forward.
You mentioned reductionism. Let me use that. Since we met the first time we have the same deep disagreement about what needs to be assessed,evaluated and eventually understood. I focus on patienthood, on how becoming a patient transforms people abilities. You focus on the handshake, the moments where the patient interact with the professional side of the health care system. I believe that the danger of your vision is in the limit of the scope of what is fundamental.
Of course my view is not important, UNTIL you mention building a new science. IMO, you just can’t build a real science of patient engagement if you don’t have at your disposal a deep understanding of modern patienthood. Shared decision making, or even all moments of participation between patients and their professional helpers is just a tiny fraction of what happens in the life of a patient suffering from a serious disease. Sara Riggare’s symbolic red dot speaks loudly about the dangers of that reductionist way to look at the value of the modern patient. How can you promote autonomy of the patient, which I hope is one of your goals, via the development of the science of patient engagement if it is not clear who the patients are and what their total impact on medicine is?
The paradigm shift you mention doesn’t start at the level of engagement with the system, it goes much deeper. It starts with people independently experiencing what it is to be a patient living in our networked universe, suddenly able to have access to the knowledge of the network, able to benefit from the networked wisdom of microexperts. You discovered ACOR because your doctor mentioned it. That’s an anomaly. Most people discover their network support systems on their own in a way disconnected from any healthcare system and they never look back, not even realizing that in an instant they have bypassed in many ways what you are trying to assess with the science of patient engagement. These modern patients are clearly a new arm of medicine. I believe that you should promote the development of the science that assess both their abilities and their impact, inside and outside of any healthcare system. Science is based on irrefutable facts not on evangelism.
As Paul has mentioned it will take many years and sustained financial efforts to create the validated building blocks of a new science focused on the patient roles in medicine ( not as in “let’s patients help” but as in “patients already do medicine”). In the early 2000’s RWJF originally funded a set of research projects but then veered in some other direction. I haven’t seen any other significant funding since. I wish the federal government would set aside some funding for the next decades to finally get to what are the commonalities between the work we each do. These commonalities, and not pour differences, are where the jewels of the patient involvement in medicine are. It is there that our nations will find valuable ways to bring down the costs of healthcare, with the support of the respective populations.
Of course, I have no objection with your pursuing all of your excellent work. Social change takes decades and many actors! This project is one pathway along one dimension.
Dave,
These posts that support your mission for Mayo, to tender the comparable Kuhn paradigm model to build a model to shift behavioural thinking into action to a new level using the scientific method as a model for change is quite impressive.
I like Gilles stance on the classification of patient that supports what you’re doing:
“Most people discover their network support systems on their own in a way disconnected from any healthcare system and they never look back, not even realizing that in an instant they have bypassed in many ways what you are trying to assess with the science of patient engagement.”
When Gilles adds: “the modern patient has risen to become a class of its own, has achieved its own status, and therefore: the patient state of the art patients are clearly a new arm of medicine.”
It is his understanding of the fact that patients, along with others like yourself and those at Mayo, will help promote new ways of thinking and bringing this initiative to a level of action that can make a difference to the lives of not just patients but everyone whose life and work revolves around the patient.
To your interest Dave in promoting the development of a science paradigm for the movement to which you refer, Gilles’s idea that: “you should promote the development of the science that assesses both the patient’s abilities and their impact, inside and outside of any healthcare system. Science is based on irrefutable facts not on evangelism,” has merit.
Best wishes on your continued effort that is making a difference for all.
Elizabeth Rankin
Dave,
A great post, and I love your enthusiasm for Kuhn, who explains so many things about how health care research works really works, the hallowed inertia of “Normal Science” and the difficulties faced by innovators, long before anyone talked about crossing the chasm or disruptive innovations.
One of the problems with this field is that there are so many different approaches, starting with Albert Bandura’s classic paper on Perceived self-efficacy in controlling AIDS (1990).
We have been working on a new health confidence score (www.r-outcomes.com/engagement), where patients self-report how confident they are about their knowledge of their health, ability to look after their health, finding the right help when needed and involvement in decisions about their care.
Sounds like terrific additional information, Tim! Please have a look at the additional posts in this series – I hope you’ll contribute your experise and experience to the ongoing thoughts.
If my speech at Mayo next week is at all successful, this will quickly expand to be a topic in many areas far beyond the reach of any one person – which is as it should be, for a big new subject that hasn’t yet gotten formalized.
I will be delighted to contribute. One of the problems is that if you identify anomolies, you are immediately treated as being a bit “dangerous” and liable to rock the apple cart. This is almost as dangerous as being a whistle-blower about patient safety. It can take decades for it to be accepted that what was once hallowed was really rubbish, during which interval many careers can easily be ruined.
Patient engagement is a big subject. My own angle is the need for short generic metrics for outcomes, engagement and experience.
Angela Coulter’s Engaging Patients in Healthcare (McGraw Hill 2011) is a good introduction, looking at the broad picture.
Tim, sorry for the delay in responding – it was a busy multi-event week.
> if you identify anomalies, you are immediately treated as being a bit “dangerous”
> and liable to rock the apple cart.
Yes, absolutely – if you go back and read the top part of the Wikipedia article on the book (which I cited), it makes that point exactly: contrary to science’s self-image back then (and to some extent today), progress in scientific thought is not a matter of layering-on of additional information that simply improves our focus on perfection as time goes by; there is a social aspect, including the reality that if a paradigm gets thrown off the cliff, everyone who was an expert in it is no longer an expert in the new world.
Naturally, this leads to some hesitation to change until it’s clear there’s a darn good reason and it’s unavoidable!
That’s why in my view it’s so important to start this process by focusing on some plain, raw, uninterpreted facts (aka observations, in the physical sciences, like astronomy). There may be arguments about what the facts MEAN, but if everyone at least agrees it happened, it’s like a foundation brick.
My friend and fellow SPM board member Peter Elias MD posted a great line about this from science fiction author Philip K. Dick (1928-1982): “Reality is that which, when you stop believing in it, doesn’t go away.” :-)
Wow, great comments and thoughts. I tend to agree that this goes beyond engagement. Some of you have seen in the theses that Dave Chase and I have been sending around that engagement can be a lot of things, but to me, the roots are in attention and decision-making (the new currency). In that light, a person can be well-engaged with their health throughout the day, every day, but rarely, if ever, engaged with the health system.
People, their digital tools and their algorithms will be able to identify patterns better than a 7-minute office visit. Feedback is the key to learning.
As always, your insights and provocative questions bring fresh thinking and reflection. Thank you! I too have been intrigued by the notion of what it takes to change fundamental mindsets, traditions and deep rooted cultures and I love how you look at this from scientific revolution perspective. I have been researching what happened to Copernicus and drawing analogies with the shift I think we are experiencing but you take this thinking to a deeper level. I ve just downloaded KUHN’s book for my plane ride this morning. Ill get back to you on what I learn!
I also love the notion of advancing patient engagement as a science – too many people are trying to push this aside as something fluffy and we have to penetrate the medical mindset of ” in god we trust, everyone else bring data!” Thanks my good friend for shaking up the world as we know it, you are making it a better place and I am thrilled to be part of the revolution. Cheers, Leslee from Canada
Peter Pronovost MD is one who also challenged others to “think” along the line of using science as the basis to create patient care that could be safely provided. He went on to create a course in 2013, The Science of Patient Safety which is open to anyone and is offered online each June using the Coursera platform.
Doctors have been trained to think from a scientific basis so bringing the concept of patient collaboration to the scientific level as a model for study and research, that involves patients and professionals, will advance a new and expanded reasoning and basis for re-thinking how we will engage patients differently. We can extrapolate our findings, using science and advance our cause related to issues patients face.
I hope you video your presentation and provide us updates on how your presentation was regarded. Please inform us what we can do to help you get this project off the ground so we can work together to advance this endeavour.
Elizabeth Rankin
Liz, just to be clear, this proposal is not about patient safety per se, it’s about patient engagement, as the title says.
Of course it seems clear that better safety is one result when patient-provider partnership is working well. (There are examples in my own family.) I’m just saying that’s not the focus of this inquiry.
Yes, I recognize the thrust isn’t on patient safety, rather it is patient engagement. However, the science to which you refer as a thesis for engagement extrapolating the views of Kuhn speaks to using the elements of thinking along the scientific reasoning for extending the notion of patient engagement into a theoretical framework, thus building a framework for engaging patients and physicians and others who service patients.
Elizabeth Rankin
I worry a bit about making PE so scientific. Do I dare say that research and science in medicine can be and often is inhibited by long delays in getting from ‘evidence’ to practice and wrought with one researcher trying to disprove the other, and then providers disagreeing over whether it’s really a ‘best practice’ or not….and then the competition for funding the research which feeds the HC business model. I really, really think that patient engagement has moral and ethical components that are crucial and so basic to it being meaningful. I don’t think we can just leave it to science. I get why you want to make it ‘clinical’. But I believe at my core that it’s more about empathy, ethics,respect, and changing attitudes. As Berwick said ‘nothing about me, without me’. It has to be a core value in health care. Patients ought to be giving permission to their docs to access their medical records, not the other way around. And that shouldn’t take years of research to prove its value. It’s a power shift that will take more than proven clinical outcomes to loosen the grip on. My two cents….