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 are links to the other posts in this series:
I vividly remember the first time I realized that my neurologist and I are in possession of vastly different although complementary types of knowledge. At the time, I had been a patient of his for a couple of years and in between appointments, I would write my questions about Parkinson’s disease (PD), my treatment, and other things that I thought were related to my condition on a list that I brought to my next visit. He would patiently answer my questions as best he could and on the subway going home from the clinic, I would start my next list.
(more…)
Even though the notion of shared decision-making in healthcare was first mentioned in scientific literature already during the 1970s, the main development in the field has taken place since 1997, when the well-cited article “Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)” by Charles et al. was published. In it, the authors state that “To date, the concept has been rather poorly and loosely defined”. They go on to suggest the following four “key characteristics of shared decision-making (1) that at least two participants–physician and patient be involved; (2) that both parties share information; (3) that both parties take steps to build a consensus about the preferred treatment; and (4) that an agreement is reached on the treatment to implement.”
(more…)