Patient engagement is advocated widely across health systems worldwide, but what we mean by “engagement” differs greatly depending on context. Consider two scenarios: a patient working with her doctor to decide on a cancer treatment, and a patient representative helping design a cancer research trial. Both fall under “patient engagement,” yet they involve distinctly different roles and…… Continue reading A New Framework: Primary and Secondary Patient Engagement
Category: Featured
Medverkan med mening – lärdomar och utblickar från Samka-konferensen
Den 23 april 2025 var jag med och arrangerade den digitala slutkonferensen för projektet Samka – ett initiativ för att främja samverkan med patienter och närstående inom forskning, vård och omsorg. Konferensens tema var talande: “Medverkan med mening – Hur kan Sverige framtidssäkra en genuin patient- och närståendesamverkan?” Hela konferensen spelades in och de åtta delarna finns nu tillgängliga…… Continue reading Medverkan med mening – lärdomar och utblickar från Samka-konferensen
Managing medication in PD – both complex and simple?
Taking medication for Parkinson’s disease (PD) sounds simple: just follow your prescription, take your pills on time, and you’ll be fine. But the reality is far more complicated. I take my meds every three hours just to be able to move, function, and work—but figuring out the right schedule has been a long process of trial and error.
There is no research comparing different approaches to medication timing, and neurologists rarely ask about the adjustments I make between visits. Yet, those small changes—like shifting a dose by 30 minutes—can make the difference between feeling functional and struggling with symptoms.
Despite its importance, optimizing PD medication is an under-researched field. Why? Complexity, money, and the illusion of simplicity. This post explores why managing Parkinson’s meds is harder than it looks and why PwP are often left to figure it out on their own. Because in the end, it’s not just about taking pills—it’s about living well.
Nej, vi är INTE alla patienter!
Idag medverkade jag i en panel på en digital konferens om den svenska life sciencestrategin och hur arbetet kan/bör/ska fortgå framåt för att “kraftsamla och göra verkstad” med “patientnytta i fokus”. (OBS: min användning av citattecken är inte ironiskt menad, det är faktiska citat från konferensen.) Jag har medverkat i rådgivande grupper på departementsnivå sedan…… Continue reading Nej, vi är INTE alla patienter!
Understanding Parkinson’s: The curse of knowledge
I just realised that I have probably been suffering from the “curse of knowledge” when trying to explain Parkinson’s (PD) to people. With this I mean that things that are obvious to me are probably not as obvious to others when it comes to understanding Parkinson’s. Let me demonstrate with a few examples: Biomarkers in…… Continue reading Understanding Parkinson’s: The curse of knowledge
Patient self-experimentation makes the headlines!
What is self-experimentation? Sanctorio sitting in the balance that he made to calculate his net weight change over time after the intake and excretion of foodstuffs and fluids. Self-experimentation is a type of single-subject research where the researcher and the research subject are one and the same. This is a practice with ancient traditions and…… Continue reading Patient self-experimentation makes the headlines!
This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”
(This blog post is also available in Swedish =>> here) Most people living with Parkinson’s disease take a lot of pills, multiple times a day. After having Parkinson’s for a while, it’s not uncommon to be prescribed 3-4 different types of medications to be taken in various combinations 4-6 times each day. One of my…… Continue reading This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”
Classification of patient knowledge
I vividly remember the first time I realized that my neurologist and I are in possession of vastly different although complementary types of knowledge. At the time, I had been a patient of his for a couple of years and in between appointments, I would write my questions about Parkinson’s disease (PD), my treatment, and…… Continue reading Classification of patient knowledge
Patients’ experiential knowledge and expertise
I recently came across a very interesting scientific article, published almost 50 years ago, with concepts that are definitely still relevant and important today: Borkman, T. (1976). Experiential Knowledge: A New Concept for the Analysis of Self-Help Groups. Social Service Review, 50(3), 445–456. https://www.journals.uchicago.edu/doi/10.1086/643401 I have been a chronic disease patient now for almost four decades and a…… Continue reading Patients’ experiential knowledge and expertise
“Do you want to drink cappuccinos or do you want to get well?”
Even though the notion of shared decision-making in healthcare was first mentioned in scientific literature already during the 1970s, the main development in the field has taken place since 1997, when the well-cited article “Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)” by Charles et…… Continue reading “Do you want to drink cappuccinos or do you want to get well?”