The posts listed below comprise a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. In the last post, I reiterate my question for the SDM community that I used to close my keynote.
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
I closed my ISDM 2026 keynote with a statement I meant as an invitation, not a conclusion:
“The blue dots are full of knowledge, and the question is whether shared decision making is ready to see it.”
It got no reaction in the room. No hands up, no pushback, no “yes, and.” Which is interesting in itself, because everything leading up to it was pretty provocative — the epistemic injustice framing, the idea that patients develop phronesis healthcare has no category for, the suggestion that SDM as a field was built to receive episteme and techne but not practical wisdom. Plenty of people engaged with those points directly in the Q&A. But the closing question itself landed in silence.
So I want to ask it here, properly, and actually hear what people think.
If shared decision making is to mean something not just in the one hour I spend with a clinician, but in the 8,765 hours I spend managing my Parkinson’s on my own — what would actually need to change? Is it how we define a decision? How we define sharing? Whether we treat a patient’s years of self-observation as a legitimate form of knowledge, on par with clinical evidence, rather than as background color for a conversation about their preferences?
Or, alternatively: is this asking too much of SDM? Is the gap between the red dot and the blue dots something a different field, or a different set of tools, should be responsible for closing — and SDM’s job is, reasonably, just the red dot?
I’d genuinely like to know where people land. Was the silence in the room agreement, uncertainty, or something the question itself didn’t quite reach? Tell me in the comments, or reach out directly — I’m working through exactly this in the Chronic Knowledge project, and the people who’ll shape the answer are the people already working in this field.
Here are links to the other posts in this series:
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
The question I was asked:
“A question as a clinician: how could we elicit that knowledge from patients during a consultation? Have you thought about any question that, as a patient, you would like to receive?”
This is a really great question, because it demonstrates both understanding of what I was trying to convey in my presentation, and genuine curiosity for how to push the field forward. It is also a question that I have never been asked before (which actually doesn’t happen very often), which makes me extra happy that it was asked. I had to think for a few minutes but this is my reply:
A few questions that I would love to be asked when I am seeking help from healthcare:
The key is asking about process and observation, not just symptoms. And honestly, it’s less about finding the perfect question and more about signaling genuine curiosity and making time to actually hear the answer.
Here are links to the other posts in this series:
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
The question I was asked:
“I was wondering if you think epistemic injustice is hitting all patients to an equal extent, or do you think there is any (social or other) stratification in it? Or does stratification rather depend on the clinician..?”
I don’t think it’s evenly distributed at all. Health literacy, socioeconomic status, language, time, energy, and disability all shape a patient’s capacity to develop and voice this kind of knowledge. And per the four-factor framework from Part 1 of my presentation, it also depends heavily on which clinician and institution you happen to land with — so it’s stratified on both sides of the relationship. This is actually one of the open questions Chronic Knowledge is designed to investigate empirically. I’d guess the injustice compounds for patients already disadvantaged in other ways, but I don’t have the data yet.
Here are links to the other posts in this series:
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
The question I was asked:
“I think at the root of your message there is a very powerful insight, patients also develop knowledge that should be considered. What is striking to me then, who takes responsability if the new way of taking the pills makes any harm to the other patients?”
Excellent question, and important to be precise about: nothing I say in my presentation removes clinical responsibility. My neurologist didn’t just copy what I did — he evaluated it against his own knowledge and judgment, and made a professional decision to prescribe that way. My observation was an input into his reasoning, not a substitute for it. Patient phronesis is raw material for clinical decisions; the clinician stays accountable for what they do with it, same as with any other information they weigh.
It’s also worth naming the asymmetry underneath the question: most clinicians don’t actually know whether or how their patients are taking their medications as prescribed in the first place. As soon as we leave our doctor’s office, we go back to our real lives, where we forget to take our pills on time because we were enjoying a deep conversation with someone we love. Or we experience really bad side effects on a Saturday and the doctor isn’t available again until Monday morning. Or we don’t take our pills because we can’t afford them. (In this context, I strongly recommend checking out the work by Victor Montori and others on “the burden of treatment”) This happens all the time, without being reported — so in a strange way, a patient who observes, experiments deliberately, and then reports back, like I did, is offering far more visibility into real-world medication use than the silent default the system usually gets.
Here are links to the other posts in this series:
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
The question I was asked (paraphrased by me):
“What’s your opinion on healthcare delivered patient education?”
Patient education is important and valuable, and for people just diagnosed with a chronic or long-term condition it is often a great start. What is taught is however largely techne and episteme (I explain these concepts in my presentation) flowing one way, from system to patient. It answers “how do I do X,” not “what have I learned about my own case that the system doesn’t know yet.” I want all patients to have access to high quality conventional patient education, complemented by, not mistaken for, mechanisms that let knowledge flow the other direction too.
Here are links to the other posts in this series:
This post is part of a series where I elaborate on questions I was asked after my keynote in the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.” You can find links to my recorded keynote and to the other posts in the series at the end of this post.
The question I was asked (paraphrased by me):
“How can we trust patients’ knowledge when there are anti-vaxxers and science deniers?”
It is an important distinction to draw. In my presentation I am NOT arguing “trust whatever a patient believes.” I’m describing a specific, bounded kind of knowledge: systematic observation about your own body, tested through a question-observe-reason-explain cycle, validated by what actually happens when you act on it. Vaccine hesitancy is usually about generalizing from anecdote to population-level causal claims — exactly the kind of claim personal science isn’t suited to make. Phronesis is expertise about your own case, not a substitute for epidemiological evidence. What I want is better ways of recognizing and validating the former, not a blanket “trust patients or don’t” switch.
Here are links to the other posts in this series:
In this post you can watch my keynote, “Patient-Led Shared Decision Making: The Red Dot and the Blue Dots,” (see video below) that I prepared for the 13th International Shared Decision Making (ISDM) Conference, hosted at Dartmouth College, USA, July 7, 2026 to July 10, 2026. From the conference website: “With the 2026 theme, ‘A Wider Lens,’ this year’s conference will bring together clinicians, researchers, patients, and policy leaders to expand our understanding of shared decision-making across specialties, care settings, and systems.”
Further down, you can read a summary of my talk.
I use my “dotto-graphic” to reframe how we can think about shared decision making: one red dot represents the single hour I spend each year in clinical care for my Parkinson’s; a field of 8,765 blue dots represents every other hour of the year, when I’m managing my condition on my own.
The talk moves through three parts.
First, I look at shared decision making as it’s currently defined and practiced, drawing on the newly published Oxford Textbook of Shared Decision Making in Healthcare, including the patient-perspective chapter I co-authored.
Then I move into the blue dots with specific stories, splitting a medication dose, deciding to start using a rollator, identifying a missing pill by touch in the dark, to show the kind of practical wisdom patients develop that rarely makes it into the clinic.
Finally, I argue that the gap between the red dot and the blue dots isn’t a communication problem but an epistemological one: healthcare is built to recognize scientific and craft knowledge, but has no framework for patient wisdom (phronesis).
I close by introducing my new research project, Chronic Knowledge, and the concept of meta-selfcare, and leave the audience with a question: if shared decision making is to mean something beyond the clinic walls, what would need to change in how we define decisions, sharing, and knowledge itself?
Here’s a video of my presentation of the research project Chronic Knowledge from the Global Conference on Person Centered Care in Gothenburg on 6 May 2026. Subtitles are available in English & Swedish.
Sign up for updates from the project via this link: https://ui.ungpd.com/Surveys/2d29f1ea-227f-48bd-b47a-57c38f310ab1
(Denna text finns även på svenska HÄR)
I have lived with Parkinson’s disease for over 40 years. I was diagnosed in 2003, but my first symptoms appeared in 1984 — when I was thirteen. I have spent much more of my life managing this condition than not. And I want to tell you something that might sound strange: I have gotten quite good at it.
Not because Parkinson’s is easy. It is anything but. People sometimes tell me I make it look simple, and it always makes me want to laugh. What they’re seeing is the surface. What they don’t see is all the hard work. Every single day involves multiple medication doses, carefully timed to within minutes, the pattern recognition built over decades, the constant process of observing, adjusting, learning, and refining. This is not following instructions. It is something else entirely.
I’ve spent years trying to articulate what that something else is. And I think I finally have a name for it.
When people talk about the crisis in chronic care, they tend to point to three things: chronic conditions are increasing, healthcare systems are struggling to cope, and our research on how patients manage their health is inadequate. All true. But I want to suggest that these aren’t actually the core problems — they’re symptoms.
Take the first one. Chronic conditions are increasing largely because people are living longer. And people are living longer thanks to scientific progress enabling us to survive diseases that only decades ago would have meant a certain death.This should be celebrated as the success it is, not treated as a crisis in itself.
The second is even more revealing. Healthcare systems have been struggling with chronic conditions for over 50 years. We have known for that long that the models we use are not fit for purpose. So why haven’t we fixed it? If this were simply a structural or funding problem, we would have solved it by now. The problem runs deeper.
And the third — the research gap in selfcare — is real, but it points to something specific. The gap isn’t just that we haven’t studied enough. It’s what we’ve studied and what we’ve systematically ignored.
Here is what I think is actually going on.
Healthcare was built on a particular idea of what knowledge is. In ancient Greek philosophy — and I promise this is relevant — there are three distinct forms of knowledge. Aristotle called them episteme, techne, and phronesis.
Episteme is theoretical, scientific knowledge: universal, verifiable, context-independent. Think clinical guidelines, randomised trials, biomedical evidence. This is what healthcare systems are extraordinarily good at producing and recognising. It is the language of medicine.
Techne is craft knowledge — the practical skill of executing a task competently. This is where conventional selfcare largely lives. The patient is taught by a healthcare professional how to administer insulin, monitor their blood pressure, follow a dietary plan. Techne is teachable and transferable, and healthcare is reasonably good at transmitting it, usually in the form of patient education.
Then there is phronesis: practical wisdom. The capacity to judge well in complex, real-world situations. It cannot be fully codified or handed over in a leaflet. It is developed through lived experience, reflection, and iterative learning over time. It belongs to the person who has cultivated it.
And here we find the core of the problem. Healthcare is a sophisticated machine for generating and transmitting episteme and techne. But it has almost no framework for recognising phronesis — the deep, hard-won practical wisdom that patients develop through years of living with their conditions.
That wisdom exists. I know it does, because I have it, and so do thousands of people like me. But the system cannot see it.
Selfcare research reflects this blind spot almost perfectly. The overwhelming focus has been on whether patients do what they are told — medication adherence, lifestyle compliance, appointment attendance. These are techne questions, asked from the clinician’s perspective.
Almost no research has asked a different question: how do patients learn? How do they reflect on what works and what doesn’t? How do some patients, over time, develop genuinely sophisticated health management strategies that go far beyond anything their clinical team prescribed?
I call this meta-selfcare. It is the higher-order process by which patients systematically refine and evolve their selfcare — not just doing, but observing, analysing, experimenting, and improving. While conventional selfcare is condition-specific and reactive, meta-selfcare is adaptive, cross-condition, and proactive. It is the difference between taking medication and continuously optimising when, how, and in what combination you take it based on your own observations and lived experience.
Some patients do this without anyone ever acknowledging it as a form of expertise. That invisibility is not accidental — it is the direct consequence of a healthcare epistemology that was never designed to receive this kind of knowledge.
This is what philosophers call epistemic injustice: the harm done when someone’s knowledge is not recognised as knowledge at all. Patients with chronic conditions experience this constantly. Our insights are filtered out at the point of clinical encounter, because the system has no category for them.
Naming matters. When we give something a name, we make it legible. We create the conditions for it to be studied, valued, and ultimately integrated.
That is what the Chronic Knowledge project is about. Funded by the Swedish Research Council and running from 2026 to 2029, the project will do three things: develop a conceptual model of meta-selfcare grounded in the experiences of expert patients; investigate how widely these practices occur across patient populations; and co-create — together with patients and healthcare professionals — practical recommendations for integrating this expertise into healthcare systems.
Crucially, patients are not just research subjects in this project. An international Expert Patient Advisory Board will provide input at every stage. Because if the argument is that patient knowledge has been systematically undervalued, it would be somewhat absurd to study that question without centering patient knowledge in how we do so.
I am sometimes asked what I want from healthcare. My honest answer is not more information — I have plenty of that. What I want is for healthcare to develop the capacity to learn from me and together with me, not just prescribe to me.
I have over 40 years experience from living with a very complex chronic condition. I have developed strategies that work, abandoned ones that don’t, and built a detailed model of how my particular version of Parkinson’s behaves. That knowledge is real. It has clinical relevance. And right now, it mostly disappears the moment I walk out of a consultation room.
The Chronic Knowledge project is, at its heart, an attempt to stop that disappearing act. To build the conceptual vocabulary, the empirical evidence, and eventually the systemic frameworks that allow patient wisdom to be seen, received, and used.
It is, I think, overdue by about 50 years. But I am glad we are starting now.
Sara Riggare is a researcher at Uppsala University and principal investigator of the Chronic Knowledge project. She has lived with Parkinson’s disease since 1984. Subscribe to updates from the Chronic Knowledge project HERE.
