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:
(Detta inlägg finns även på svenska: LÄNK)
(This post is complemented with a checklist: LINK)
I have been part of literally hundreds of conversations and meetings with researchers, healthcare professionals, companies, agencies, conference organizers and others wanting to involve patients. Here, I have listed 12 arguments that I have heard when asking if the offer comes with some form of payment (plus one bonus argument, which I think is the true reason that patients are often expected to work for free)
First, let’s make sure that we’re talking about the same thing:
When I teach or present on patient involvement, I always spend some time at the start to ensure that we all agree on what we’re talking about. If the topic is how to engage patients in participating in research studies or clinical trials, I refer to it as primary patient engagement. For conversations on getting patient input on the structure and/or process of studies or trials to improve them for upcoming participants, I use the term secondary patient engagement. I have written about this before => link to post.
Many regulatory bodies, research funders, governmental authorities and others all around the world are increasingly promoting, encouraging, and even demanding secondary patient engagement for applications and projects. And that is what this post is about: secondary patient engagement.
I want to point out that the same principles apply to engaging patients to help improving healthcare processes or facilities, medtech products, evaluating research applications, speaking at conferences etc.
Here we go, 12 arguments I’ve heard on why not to pay patients:
(edit: now with five additional arguments, based on comments and feedback, between reasons 12 and 13)
Imagine a project meeting where a researcher, a clinician, a project manager—and a patient—are all invited to help improve a study design. The meeting has an agenda, background material is sent out in advance, and everyone is expected to read it, think it through, and contribute informed input.
The researcher, clinician, and project manager are all attending as part of their paid workday. The patient is described as “volunteering.”
Yet the expectations are the same: show up on time, be prepared, share expertise, and help shape decisions the project depends on. The only real difference is how the contribution is labeled—and whether it is compensated.
How can this argument be met?
Imagine the same meeting where everyone is paid for their time—except the patient, who is told that payment might make their input less independent. The implication is that being unpaid makes their perspective more trustworthy. Strangely enough though, the paid professionals’ independence is never questioned.
No, they don’t. This argument overlooks that these activities usually take place within paid employment, during salaried work hours, and contribute to professional merit, networks, and career progression. What appears as “unpaid” is in fact embedded in a system where time, status, and long-term benefit are already compensated. Patients, in contrast, are expected to contribute outside any such structure.
Counterarguments
Another type of argument relates to financial aspects. It is often said that compensation simply wasn’t planned for, as if budgets were fixed facts rather than reflections of priorities. Yet the same project easily finds funds for venues, catering, consultants, and staff time—which simply means that the real issue is not lack of money. It’s about what the organization sees as important.
This argument points to practical hurdles—tax forms, payment systems, insurance, procurement rules—as if these were insurmountable barriers. But the very same administrative machinery routinely handles fees for consultants, speakers, and external experts. What it reveals is not true complexity, but that the system was never designed with patients in mind as formal contributors.
This argument reflects a concern that some patients might become too experienced, too familiar with research and healthcare processes, and therefore somehow less “authentic.” The strange thing is that in every other context, growing competence and repeated involvement are seen as assets that improve quality. What is framed as a risk here is, in practice, the very process by which expertise is developed.
This frames participation as a gift to the patient rather than a contribution to the project. It suggests that the opportunity to be involved is itself a form of compensation, shifting attention away from the value the patient adds. In doing so, requested work is seen as a favor granted, rather than expertise sought.
This is an especially infuriating argument, that patients should not be paid because they get benefit from their contributions in the form of strengthening of health and motivation. This argument suggests that any personal health gains a patient might experience from being involved somehow replace the need for compensation. It implies that improved understanding, empowerment, or a sense of purpose is “payment enough.” By that logic, however, no one whose work is meaningful, educational, or professionally rewarding would ever need a salary.
This argument assumes that financial motivation makes participation less genuine, as if only those who can afford to contribute for free are the “right” voices. In practice, it means that unpaid involvement filters out anyone without spare time or financial flexibility. Rather than protecting quality, it quietly ensures that only the most privileged patients are able to take part.
This argument suggests that patients lack the technical understanding required to warrant compensation, as if payment were reserved only for formal expertise. Yet patients are invited precisely because they bring a different kind of knowledge—about living with a condition, navigating care, and seeing gaps professionals may overlook. Dismissing this as insufficient knowledge overlooks the very reason they were asked to contribute in the first place.
This argument rests on tradition: it has always been done this way, so it feels natural to keep doing it. But history mostly tells us how things used to work—not whether they still make sense. Many of the improvements in patient involvement have come from challenging exactly these old routines.
This argument points out that some patients prefer to contribute without compensation, or may be restricted by benefit rules or employment status. While this may certainly be true for some individuals, it turns a personal choice into a general rule for everyone. The fact that a few people are willing—or forced—to work for free does not mean that unpaid work should be the norm.
These additional reasons have been added as a result of comments and feedback:
This frames visibility and networking as a substitute for compensation. It assumes that exposure, contacts, or prestige are adequate payment for preparation time, travel, and sharing expertise. In practice, it mirrors a pattern where patients are expected to trade real work for intangible benefits that primarily serve the organizer.
Counterarguments
This argument reframes access to a product or service as a form of compensation. It treats the patient’s time and expertise as something that can be exchanged for exposure, testing access, or early use of a tool. In reality, this shifts the relationship from collaboration to unpaid product testing, where the patient’s contribution creates value for the company or project without any financial recognition.
Counterarguments
This argument asks the patient to take on the financial responsibility for enabling their own participation, while everyone else is paid from the project’s budget. It turns involvement into a personal funding problem and shifts the burden of resourcing the project onto the very person whose knowledge is being requested.
Counterarguments
This starts as apparent goodwill: praise for your contribution and an expressed intention to compensate you. You provide the requested invoice or details—and then nothing happens. Months pass. A year later, you’re warmly invited back because your previous input was “so valuable,” while the earlier payment is still unresolved.
Counterarguments
This argument relies on the fact that some patients, out of goodwill, passion, or necessity, are still willing to contribute for free. It shifts the focus from fairness to replaceability, implying that the issue is not the value of the contribution but the willingness of someone to accept unpaid work.
Counterarguments
The real, unspoken argument is probably:
“If we start paying patients, we acknowledge that their knowledge is work. And that challenges the existing knowledge hierarchy”
This is not about money. It is about epistemic status.
This is about how we view knowledge, not about money.
Here is an argument that can be used to close:
Either this is a real contribution to research and healthcare improvement — and should be compensated.
Or it is symbolic participation — and we should be honest about that.
Which ones have you heard? Have you heard any other arguments for not paying patients? Let me know in the comments.
