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
Author: SaraRiggare
Uppdatering av Helsingforsdeklarationen
Visst känner du till Helsingforsdeklarationen? Den antogs första gången för 60 år sedan av World Medical Association (WMA) och fastslår ett antal etiska principer att beakta i medicinsk forskning. Helsingforsdeklarationen är inte juridiskt bindande men har haft stor inverkan på lagstiftning och regelverk i hela världen, inte minst i Sverige. I samband med WMA:s 75:e…… Continue reading Uppdatering av Helsingforsdeklarationen
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!
“Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking” as a podcast
This is a podcast version of my published scientific article "Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking" (https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181314) created by Google Notebook LM.
This is a podcast version of my published scientific article “Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking” (https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181314) created by Google Notebook LM.
“Vill du dricka cappuccino eller vill du bli frisk?”
I vården pratar man ibland om “delat beslutsfattande” (shared decision-making på engelska). Det innebär enligt en rapport från SKR (länk): “Delat beslutsfattande eller shared decision making är ett arbetssätt för att öka individers delaktighet i vården och omsorgen. Metoden hjälper personen att ta en aktiv roll i beslut om den egna hälsan och om behov…… Continue reading “Vill du dricka cappuccino eller vill du bli frisk?”
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”
Därför är patientmedverkan viktigt i utvecklingen av vården eller “Det verkar besvärligt men om du verkligen vill så kan du få prova”
(This blog post is also available in English =>> here) De flesta som lever med Parkinsons sjukdom tar många piller, ofta flera olika sorter och flera gånger varje dag. När man haft Parkinson ett tag så är det inte ovanligt med 3-4 olika typer av mediciner som tas i olika kombinationer vid 4-6 tillfällen varje…… Continue reading Därför är patientmedverkan viktigt i utvecklingen av vården eller “Det verkar besvärligt men om du verkligen vill så kan du få prova”
“Empowering patient research” – an Aeon essay by Charlotte Blease and Joanne Hunt
I am happy and proud to be mentioned in this excellent essay on a topic very important to me: https://aeon.co/essays/we-need-the-first-hand-experience-of-disabled-researchers
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