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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.
The problem we keep misdiagnosing
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.
Whose knowledge counts?
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.
What we’ve been missing
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.
What changes when we name it
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.
An invitation
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.