Sara Riggare

Not patient but im-patient

Category: Featured

  • I found my people at a conference in Amsterdam in November 2011… and now we’ve written a book together

    I found my people at a conference in Amsterdam in November 2011… and now we’ve written a book together

    In November 2011 I travelled to Amsterdam for the Quantified Self Europe conference. It was my first ever unconference, and I was nervous enough about it that I started my website while I was there — the first two posts on riggare.se were written during those two days.

    Reading them today is a bit like finding an old photograph of yourself: “I love the idea of having the focus of the meeting on the breaks between the presentations, since everybody knows that the really sparking ideas are born over a cup of coffee and some strange looking local speciality…”

    I had no idea how right I was.

    What I brought with me

    My show&tell was called “Monitoring Parkinson’s“. I talked about using an iPhone reminder app to get my medications taken on time — six different drugs, six times a day, in six different combinations — and how the app eventually made itself unnecessary, because I had learnt to feel in my body when the next dose was due. I talked about jumping onto a Nintendo Wii balance board in the mornings, and about tracking my sleep.

    And I ended by saying that what I really wanted was to learn more, that what you call a person who wants to know as much as possible about a subject is a researcher, and that I wanted to be one. A few months later I started my PhD at Karolinska Institutet.

    I had been doing versions of this for years — noticing, noting, testing, adjusting — without having a word for it. The first time I heard the expression Quantified Self, I felt seen. There was a name for it.

    What I found

    Somewhere on the first day I sat through an ignite talk about tracking the effects of alcohol by Caspar, a blue-haired child psychologist with his arms full of the most wonderful tattoos: a bright yellow rubber duck, a billiard 8-ball, a stick of lipstick and many many more. I was sitting in the middle of a row and my first thought was a very Parkinson’s thought: that I couldn’t leave without drawing attention to myself. So I stayed. And while I was sitting there, not leaving, it occurred to me that what Caspar was describing could be used to help people with Parkinson’s.

    At the next QS Europe conference, he and I gave a joint talk about where that idea had gone in the meantime — via an app, a national health service competition and a clinical trial. Our advice to the audience was: don’t assume you know where your idea will go, and make good use of the breaks.

    But the thing that actually kept me coming back took me three conferences to be able to put into words. I tried to explain it to my husband after the third one, thought about it for a while, and then realized:

    > At Quantified Self, I forget I have Parkinson’s.

    Because at QS, nobody evaluates or assesses you. Nobody looks at you and wonders what Hoehn & Yahr stage you are, or what your UPDRS score might be. Everybody there is measuring something about themselves, and they respect your efforts to improve your own life without judging them. If you have spent enough of your life being a set of scores in someone else’s notes, you will understand why that is such an empowering feeling.

    That is what I mean by finding my people.

    What I got wrong

    When I stood up in Amsterdam in 2011, I thought Quantified Self was about the technology. The gadgets. I was optimistic — we probably all were — that the emerging sensors and apps were going to let us manage our diseases in ways we couldn’t yet imagine.

    I was wrong about that. Technology matters, but as a tool, not as the goal. The goal is to use your own data to answer your own questions. And getting there is hard: hard to ask the right question, hard to find a tool accurate enough to trust and open enough to let you explore your own question rather than the manufacturer’s, and hard to find the time.

    That last one tends to get left out. I see my neurologist for about an hour a year. The rest of the year is already full of organising pills, restocking pills, exercising, and, ideally, having a life. In 2015 I suggested we start talking about “the burden of tracking”, alongside the burden of disease and the burden of treatment. Self-tracking has to be worth the effort — and most of the time, for me, it isn’t. So I track when I have a reason: a new symptom to investigate, a dose to time better. Then I stop.

    That is not a very good sales pitch for self-tracking. It is, I think, an honest one.

    Why a book?

    There is a persistent misunderstanding about our community: that we sit around swapping data. We don’t. What we share is methods — how someone framed their question, what they chose to observe, how they reasoned about what came back, what they did differently afterwards. In personal science it is the methods that are generalisable, not the results.

    Methods can be written down. That is what the book is.

    The Quantified Self comes out on 6 October, written by Gary Wolf with co-authors Thomas Blomseth Christiansen, Martijn de Groot, Steven Jonas, Jakob Eg Larsen, and myself. It has two jobs: to set out self-research methods clearly enough that a beginner can get started and an experienced self-tracker can sharpen their technique, and to make the case that this work is worth taking seriously. Self-tracking is not a hobby for the worried well. Reasoning carefully about your own life using your own observations is part of the basic human toolkit — and for those of us managing a complex condition in the hours when nobody is watching, it isn’t optional.

    Apparently pre-orders matter a great deal to whether a book survives its first weeks — more than I understood before I was part of one. So if you think you will want a copy, ordering now genuinely helps:

    Fourteen years ago I went to Amsterdam to find out whether anyone else was doing what I was doing. I found my people. Now we have written it all down.

  • Lived experience: patients who HAVE experienced or patients who ARE experienced?

    Lived experience: patients who HAVE experienced or patients who ARE experienced?

    “Lived experience” is everywhere now. It’s in grant applications, on advisory boards, in the ethics section of protocols, in the acknowledgements of papers. After more than 15 years of arguing that patients know things, I should be pleased.

    Mostly I am. But I’ve started to notice that when people use the term “lived experience,” they almost always mean one particular thing, and it isn’t the thing I think matters most.

    Two meanings hiding in one word

    In Swedish we have two words where English has one:

    Upplevelse is what you live through. The episode. The night in the emergency department, the moment of diagnosis, the day the medication stopped working. It’s something that happens to you, what you HAVE experienced.

    Erfarenhet is what accumulates. It’s what makes someone erfaren — experienced. It’s what’s left behind after you’ve lived through the same kind of thing enough times to know something about it, you ARE experienced.

    German makes the same split (Erlebnis and Erfahrung). English collapses both into “experience,” and I have come to realise that the lack of nuance in the English language in this case is a problem.

    Because when the health system says “patient with lived experience,” it almost always means the first one. What you have undergone. And when it says “an experienced clinician,” it means the second one. What you have become.

    Same word. Opposite work.

    The asymmetry

    Think about how differently those two words function.

    “An experienced neurologist” is a claim about authority. It’s why you want to see that particular doctor. It’s what seniority is made of. Nobody asks an experienced clinician to justify their experience; it is the justification. It’s understood to be knowledge — hard-won, cumulative, not fully writable-down, but knowledge.

    “A patient with lived experience” is a claim about authenticity. It means this person will say something true and moving that will remind everyone in the room why the work matters. It is valued. It is also, almost always, epistemically inert. It goes in the quotes box. It does not go in the methods.

    We have a whole category of authority for professionals who have accumulated experience, and no category at all for patients who have done the same thing.

    What accumulates

    I see my neurologist for about an hour a year. The rest of the year — all 8,765 hours of it — I am the one managing my Parkinson’s.

    In those hours I’ve learned to split my medication doses in ways no protocol describes. I’ve learned to identify my pills by touch, because there are situations where looking isn’t possible. I worked out, over years and not in an afternoon, how to decide about a rollator — not whether one was clinically indicated, but what it would “cost” me and what it would give back. (If you want to know more about these examples, you can watch the video here)

    That is not upplevelse. It isn’t a moving story about what it’s like to have Parkinson’s. It’s erfarenhet: knowledge built by paying attention, trying things, being wrong, adjusting, and trying again. It took decades. It is exactly the kind of thing we call expertise when a clinician does it.

    And it’s the part that there is no category for in clinical practice. I can tell my neurologist how I feel. There is no slot in the consultation for what I have figured out.

    This is not a swap

    I want to be careful here, because this argument is easy to hear as “patient knowledge should replace clinical knowledge.” It shouldn’t, and it can’t.

    My neurologist and I are both experienced. We are experienced of different things. He is experienced across many patients — hundreds (or maybe even thousands) of cases, seen briefly, which is what lets him recognise patterns between those patients. I am deeply experienced within one case — a single life, watched continuously for decades, which is what lets me notice things that never show up in an appointment. Neither of us can do the other’s job, and neither of our accumulations is a substitute for the other’s.

    That’s the whole point. If patient knowledge were the same kind of thing as clinical knowledge, it would be a competitor. It isn’t, so it’s an addition. What I’m asking for isn’t a transfer of authority. It’s that the second accumulation be recognised as an accumulation at all.

    One more thing I want to be careful about. Erfarenhet isn’t a reward for being methodical. It accumulates in anyone who lives with something long enough, whether or not they keep notes, whether or not they’d call it knowledge, whether or not they have the energy to experiment on themselves. What differs isn’t whether people become experienced. It’s whether anyone ever asks. Some people will need help articulating it. That’s a reason to build the slot in the consultation, not a reason to conclude the slot would go unused.

    One more thing, from English

    English lost the upplevelse vs erfarenhet distinction. But it kept something else, buried in the word itself.

    “Experience” comes from the Latin experiri — to try, to test, to put to the proof. So do two other words: experiment, and expert.

    An expert, literally, is one who has been put to the test.

    By that measure I’ve been an expert on my own Parkinson’s for a very long time. Not because I’ve suffered — suffering isn’t expertise — but because I’ve spent years running small, careful, unglamorous experiments on the only case I have access to, and paying close attention to the results.

    Chronic knowledge is chronic experience that has been allowed to accumulate. The question is if the healthcare system will be able to use it.

    That question (and many more) is what the next few years are for. Chronic Knowledge is a project funded by the Swedish Research Council from 2026 to 2029, and the name is only half right. What we’re studying isn’t knowledge so much as the passage into it: how the episodes of a life with a long-term condition become something a person is experienced in, what helps or interrupts that, and whether the health system has anywhere to put the result.

  • My thoughts after ISDM2026

    My thoughts after ISDM2026

    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.

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  • The Red Dot and the Blue Dots: My ISDM 2026 Keynote

    The Red Dot and the Blue Dots: My ISDM 2026 Keynote

    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.

    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.

    Part 1: The red dot

    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.

    Part 2: The blue dots

    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.

    Part 3: The whole picture

    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:

  • Co-creator in healthcare – or for your own health?

    Co-creator in healthcare – or for your own health?

    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.

  • Medskapare i vården – eller för sin egen hälsa?

    Medskapare i vården – eller för sin egen hälsa?

    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.

  • The research project Chronic Knowledge presented

    The research project Chronic Knowledge presented

    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

  • What does it do to people…

    What does it do to people…

    What does it do to people to be constantly told that they “are deviating from the norm” or “have abnormal function of X” or “are lacking in Y”?

    (more…)
  • Kronisk kunskap: kunskapen som vården inte ser

    Kronisk kunskap: kunskapen som vården inte ser

    (This post is available in English HERE)

    Jag har levt med Parkinsons sjukdom i över 40 år. Jag fick diagnosen 2003, men mina första symtom fick jag redan 1984 — när jag var tretton år gammal. Jag har tillbringat betydligt större del av mitt liv med denna sjukdom än utan den. Och detta låter kanske konstigt: men jag har faktiskt blivit ganska bra på det.

    Jag menar inte att Parkinson är enkelt. Det är det verkligen inte. Ibland säger folk att jag får det att se okomplicerat ut, och det gör mig alltid lite full i skratt. Det de ser är ytan. Det de inte ser är allt det hårda arbetet. Varje dag tar jag flera olika medicindoser, noggrant tajmade på några minuter när, mönsterigenkänning uppbyggd under decennier, och en ständigt pågående process av att observera, justera, lära och förfina. Det handlar inte om att följa instruktioner. Detta är något helt annat.

    Jag har under många år försökt formulera vad detta andra är. Och jag tror att jag äntligen kan beskriva det.

    Problemet vi hela tiden feldiagnostiserar

    När folk talar om att det är en kris för vården av kroniska sjukdomar brukar de peka på tre saker: kroniska tillstånd ökar, hälso- och sjukvårdssystemen är överbelastade, och forskningen om egenvård för patienter med kroniska sjukdomar är otillräcklig. Allt detta stämmer. Men jag vill hävda att dessa egentligen inte är grundproblemen — de är symptom.

    För det första: kroniska tillstånd ökar till stor del för att människor lever längre. Och människor lever längre tack vare vetenskapliga framsteg som gjort det möjligt för oss att överleva sjukdomar som bara för några decennier sedan hade inneburit en säker död. Det borde firas som den framgång det är, inte behandlas som en kris i sig.

    För det andra: vi har vetat i över 50 år att behoven i hälso- och sjukvårdssystemen domineras av kroniska tillstånd. Lika länge har vi vetat att de vårdmodeller vi använder inte är anpassade för behoven. Varför har vi då inte åtgärdat det? Om det bara vore ett strukturellt problem eller ett finansieringsproblem hade vi löst det vid det här laget. Problemet sitter djupare.

    Och det tredje — forskningsgapet när det gäller egenvård — är verkligt, men det pekar på något specifikt. Gapet handlar inte bara om att vi inte forskat tillräckligt. Det handlar om vad vi har studerat och vad vi systematiskt har ignorerat.

    Vems kunskap räknas?

    Detta är vad jag tror det egentligen handlar om:

    Sjukvården byggdes på en specifik uppfattning om vad kunskap är. I antik grekisk filosofi finns det tre distinkta former av kunskap. Aristoteles kallade dem episteme, techne och fronesis.

    Episteme är teoretisk, vetenskaplig kunskap: den är universell, verifierbar och kontextoberoende. Tänk kliniska riktlinjer, randomiserade studier, biomedicinsk evidens. Detta är vad sjukvårdssystem är exceptionellt duktiga på att producera och känna igen. Det är medicinens språk.

    Techne är hantverkskunnande — den praktiska förmågan att utföra en uppgift på ett kompetent sätt. Det är här konventionell egenvård till stor del finns. Patienten lär sig av vårdpersonal hur man administrerar insulin, mäter blodtrycket, följer en kostplan. Techne går att lära ut och överföra, och sjukvården är ganska bra på att förmedla den, t ex i form av patientutbildning.

    Sedan finns det fronesis: praktisk visdom. Förmågan att göra kloka bedömningar i komplexa, verkliga situationer. Den kan inte fullt ut kodifieras eller levereras i ett informationsblad. Den utvecklas genom levd erfarenhet, reflektion och iterativt lärande över tid. Den tillhör den person som har kultiverat den.

    Och det är här vi hittar problemets kärna. Sjukvården är en sofistikerad maskin för att generera och förmedla episteme och techne. Men den saknar nästan helt ramverk för att känna igen fronesis — den djupa, hårt förvärvade praktiska visdom som patienter utvecklar genom att leva med sina sjukdomar i åratal.

    Den visheten finns. Jag vet att den gör det, för jag har den, liksom tusentals människor som jag. Men systemet kan inte se den.

    Det vi har missat

    Forskningen om egenvård speglar denna blinda fläck nästan perfekt. Fokuset har helt legat på om patienter gör det de blir tillsagda — följsamhet till medicinering, efterlevnad av livsstilsråd, närvaro vid bokade besök. Det är techne-frågor, ställda ur sjukvårdspersonalens perspektiv.

    Nästan ingen forskning har ställt frågan: hur lär sig patienter? Hur reflekterar de över vad som fungerar och vad som inte gör det? Hur går det till när vissa patienter med tiden utvecklar sofistikerade strategier för att hantera sin hälsa, strategier som går långt bortom vad deras kliniska team ordinerat?

    Jag kallar detta meta-egenvård. Det är den högre ordningens process som patienter använder för att systematiskt förfina och utveckla sin egenvård — vi följer inte bara instruktioner från vården utan vi observerar, analyserar, experimenterar och förbättrar. Medan konventionell egenvård är sjukdomsspecifik och reaktiv, är meta-egenvård adaptiv, diagnosöverskridande och proaktiv. Det är skillnaden mellan att ta medicin och att kontinuerligt optimera när, hur och i vilken kombination man tar den, baserat på egna observationer och levd erfarenhet.

    Vissa patienter gör det här utan att någon någonsin ser det som en form av expertis. Denna osynlighet är inte en tillfällighet — den är en direkt konsekvens av en sjukvårdsepistemologi som aldrig designades för att ta emot den här typen av kunskap.

    Det filosofer kallar epistemisk orättvisa: den skada som uppstår när någons kunskap inte erkänns som kunskap överhuvudtaget. Patienter med kroniska tillstånd upplever detta ständigt. Våra insikter filtreras bort i det kliniska mötet, eftersom systemet saknar en kategori för dem.

    Vad som förändras när vi sätter ord på det

    Ord spelar roll. När vi ger något ett namn gör vi det verkligt. Vi skapar förutsättningar för att det ska studeras, värderas och slutligen integreras.

    Det är detta mitt forskningsprojekt Kronisk Kunskap handlar om. Finansierat av Vetenskapsrådet och kommer att pågå från 2026 till 2029 kommer projektet att göra tre saker: utveckla en konceptuell modell för meta-egenvård baserad på spetspatienters erfarenheter; undersöka hur utbredd denna praktik är i patientpopulationer; och tillsammans med patienter och vårdprofessionella ta fram praktiska rekommendationer för att integrera den här expertisen i sjukvårdssystem.

    I detta projekt är patienter inte bara forskningspersoner. En internationell panel av expertpatienter kommer att bidra under hela projektet. För om vi säger att patientkunskap systematiskt har undervärderats, vore det helt absurt att studera den frågan utan att sätta patienters kunskap i centrum för hur vi gör det.

    En inbjudan

    Jag får ibland frågan vad jag vill ha från sjukvården. Mitt ärliga svar är inte mer information — det har jag gott om. Vad jag vill är att sjukvården utvecklar förmågan att lära av mig och tillsammans med mig, inte bara ordinera lärande åt mig.

    Jag har över 40 års erfarenhet av att leva med en mycket komplex kronisk sjukdom. Jag har utvecklat strategier som fungerar, övergett sådana som inte gör det, och byggt upp en detaljerad modell av hur min specifika version av Parkinson beter sig. Den kunskapen är verklig. Den har klinisk relevans. Och just nu försvinner den i stort sett i samma ögonblick som jag lämnar ett konsultationsrum.

    Projektet Kronisk Kunskap syftar till att ändra på det. Att bygga det konceptuella ordförrådet, den empiriska evidensen, och så småningom de systemiska ramverk som gör det möjligt för patienters expertis att ses, tas emot och användas.

    Detta arbete borde ha startats för 50 år sedan. Men jag är glad att vi börjar nu.

    Sara Riggare är forskare vid Uppsala universitet och projektledare för forskningsprojektet Kronisk Kunskap. Hon har levt med Parkinsons sjukdom sedan 1984. Prenumerera på uppdateringar från Kronisk Kunskap-projektet HÄR.

  • Chronic Knowledge: The Knowledge Healthcare Can’t See

    Chronic Knowledge: The Knowledge Healthcare Can’t See

    (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.

    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.