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?
In the 1970s, the American physician and pioneer in medical informatics Warner V. Slack (1933–2018) made a statement that is frequently cited in discussions about patient participation: the most underutilized resource in healthcare is patients. It is a statement that gets quoted often, but I believe people rarely stop to consider what it actually means. I have thought about this quite a lot, and I wanted to explain my view.
In healthcare, there is much talk about patient participation and the importance of moving patients from being passive recipients of care to becoming active co-creators. This is a very positive shift. But… what is it, exactly, that patients are supposed to be co-creators in? And a resource for?
The most common interpretation of Slack’s words is that patients are a resource for healthcare — an untapped asset that the health system should make better use of. But I think that is entirely the wrong direction, and I want to turn the reasoning around:
The entire justification for healthcare’s existence rests on healthcare being a resource for us patients. We patients should never have to be a resource for the care we seek help from when we are ill.
Being a co-creator or participant in care means that a patient’s value is measured primarily by what they can contribute to the system, rather than by how care can help the patient. It reflects a fundamental logic in which healthcare is the centre and the patient is a means to make the system function better.
In practice, this might mean that patients are expected to adapt to schedules and routines that suit the system rather than their own lives. It might mean sharing data, experiences, or personal stories — not primarily because it benefits their own care, but because it is valuable for research, quality improvement, or system development. It might mean being “compliant” and following prescriptions, not because the patient understands and agrees, but because it reduces the burden on the system.
There is, of course, nothing wrong with patients contributing to the development of healthcare — that can absolutely be meaningful and important. The problem arises when this becomes the dominant interpretation of what patient participation means. When the question “how can we involve patients?” actually means “how can we get patients to help us?”, we have lost sight of who is there for whom.
This logic also risks creating a new form of inequality: patients who have the energy, language, and resources to be active and cooperative become “good” patients, rewarded with better care, while those who are too ill, too exhausted, or too vulnerable to meet the system’s expectations fall even further behind. Being an active patient becomes a performance to deliver rather than a right.
And this is where it truly matters: research shows that healthcare contributes only around ten percent of a person’s health (Schroeder, 2007). The rest is shaped by factors such as social circumstances, environment, genetics, lifestyle, and self-care — things that do not happen in healthcare but in everyday life. This means that the vast majority of health is created by us patients ourselves, in our own lives, every day.
Patients are indeed the most underutilized resource — but not primarily for healthcare. We are an underutilized resource for our own health. And to be that resource, we need knowledge — not just the medical facts that are sometimes handed out at the time of a diagnosis, but a deeper and more useful kind of knowledge: about our own condition in relation to our own lives, about what the research actually says and how it can be interpreted in light of our own situation, and about how we as patients can become more competent and independent actors in our everyday lives. This kind of knowledge does not emerge on its own and cannot be expected to come solely from brief clinical encounters. It needs to be built up systematically, with support, and in contexts where our own experiences are taken seriously as a legitimate source of knowledge. When we patients gain that knowledge, everything changes — not just how we manage our condition, but how we live our lives.
For this to be possible, participation in the clinical encounter is not enough. What is needed is for us patients to have access to relevant knowledge about our conditions, our bodies, and what we ourselves can do. Healthcare’s role then becomes not to make us better contributors to the system, but to give us the tools we need to live as well as possible with our situation. That is a crucial difference — and an important one.
One final note: Warner Slack was a pioneer in the use of digital technology in healthcare, and his statement grew from his hope that technology could help patients help themselves with their medical problems — that is, to be a resource for their own health, not for the system.
På 1970-talet gjorde den amerikanske läkaren och pionjären inom medicinsk informatik Warner V. Slack (1933–2018) ett uttalande som ofta nämns i diskussioner kring patientdelaktighet: den mest underutnyttjade resursen i vården är patienterna. Det är ett uttalande som ofta citeras men jag tror att man sällan funderar på vad det egentligen innebär. Jag har funderat ganska mycket på detta och jag tänkte förklara vad jag tycker.
Inom vården talas det ofta om patientdelaktighet och om vikten av att patienter går från att vara passiva mottagare av vårdinsatser till att bli aktiva medskapare. Detta är en mycket positiv förändring. Men… Vad är det egentligen patienten ska vara medskapare i? Och en resurs för?
Den vanligaste tolkningen av Slacks ord är att patienter är en resurs för vården, en outnyttjad tillgång som hälso- och sjukvårdssystemet borde ta bättre vara på. Men jag tycker att det är helt fel väg att gå och jag vill vända på resonemanget:
Vårdens hela existensberättigande bygger på att vården är en resurs för oss patienter. Vi patienter ska aldrig behöva vara en resurs för den vård som vi söker hjälp från när vi är sjuka.
Att vara medskapare eller delaktig i vården innebär att patientens värde i första hand mäts utifrån vad hen kan bidra med till systemet och inte hur vården kan hjälpa patienten. Det handlar om en grundläggande logik där vården är centrum och patienten är ett medel för att systemet ska fungera bättre.
I praktiken kan det till exempel handla om att patienten förväntas anpassa sig på ett sätt som passar vårdens scheman och rutiner snarare än sina egna. Det kan handla om att dela med sig av sin data, sina erfarenheter eller sin berättelse, inte primärt för att det gagnar den egna vården, utan för att det är värdefullt för forskning, kvalitetsutveckling eller systemförbättring. Det kan handla om att vara “följsam” och följa ordinationer, inte för att patienten förstår och instämmer, utan för att det minskar belastningen på vården.
Det finns naturligtvis inget fel i att patienter bidrar till vårdens utveckling, det kan absolut vara meningsfullt och viktigt. Problemet uppstår när det blir den dominerande tolkningen för hur patientdelaktighet förstås. När frågan “hur kan vi involvera patienter?” egentligen betyder “hur kan vi få patienter att hjälpa oss?” har vi tappat bort vem som är till för vem.
Den logiken riskerar också att skapa en ny form av ojämlikhet: de patienter som har energi, språk och resurser att vara aktiva och samarbetsvilliga blir “goda” patienter och belönas med bättre vård, medan de som är för sjuka, för trötta eller för utsatta för att uppfylla systemets förväntningar hamnar ännu längre efter. Att vara en aktiv patient blir en prestation att leverera snarare än en rättighet.
Och det är nu som det blir viktigt på riktigt: Forskning visar nämligen att vården bara bidrar med ungefär tio procent av en persons hälsa (Schroeder, 2007). Resten formas av faktorer som sociala förhållanden, miljö och genetik samt levnadsvanor och egenvård. Sånt som inte händer i vården utan i vardagen. Det betyder att den absolut största delen av hälsan skapas av oss patienter själva, i det egna livet, varje dag.
Patienter är verkligen den mest underutnyttjade resursen, men inte i första hand för vården. Vi är en underutnyttjad resurs för vår egen hälsa. Och för att kunna vara det behöver vi kunskap – inte bara den medicinska faktakunskap som ibland delas ut i samband med en diagnos, utan en djupare och mer användbar kunskap: om det egna tillståndet i relation till det egna livet, om vad forskningen faktiskt säger och hur den kan tolkas utifrån den egna situationen, och om hur man som patient kan bli en mer kompetent och självständig aktör i sin vardag. Denna typ av kunskap uppstår inte av sig självt och kan inte förväntas komma enbart från korta vårdmöten. Den behöver byggas upp systematiskt, med stöd och i sammanhang där våra egna erfarenheter tas på allvar som en legitim kunskapskälla. När vi patienter får den kunskapen förändras förutsättningarna, inte bara för hur vi hanterar vår sjukdom, utan för hur vi lever våra liv.
För att det ska vara möjligt räcker det alltså inte med delaktighet i vårdmötet. Det krävs att vi patienter får tillgång till relevant kunskap om våra tillstånd, om vår kropp och om vad vi själva kan göra. Vårdens roll blir då inte att göra oss patienter till en bättre medarbetare i systemet, utan att ge oss de verktyg vi behöver för att leva så bra som möjligt med vår situation. Det är en avgörande skillnad – och en viktig sådan.
För övrigt: Warner Slack var en pionjär inom användningen av digital teknik i vården och hans uttalande utgick från hans förhoppning att tekniken skulle kunna hjälpa patienter att hjälpa sig själva med sina medicinska problem. Det vill säga att vara resurser för sin egen hälsa, inte för vården.
Not patient but im-patient
