Category: Scientific publications (my own or others’)

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!

Frontispiece engraving showing Sanctorio sitting in the balance that he constructed to determine the net weight change over time after the intake and excretion of food stuffs and fluids. Credit: Wellcome Library, London. Wellcome Images images@wellcome.ac.uk http://wellcomeimages.org. Copyrighted work available under Creative Commons Attribution only licence CC BY 4.0 http://creativecommons.org/licenses/by/4.0/

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.

This is why patient involvement is important for improving healthcare or “It seems inconvenient, but if you really want to, you can try”

Image copied from: http://healthecommunications.wordpress.com/2012/02/02/patient-engagement-versus-physician-engagement-which-comes-first/

(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”

Image copied from: http://healthecommunications.wordpress.com/2012/02/02/patient-engagement-versus-physician-engagement-which-comes-first/

(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

Image from aeon.co

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

Classification of patient knowledge by source of learning. (From: Dumez, V., & L’Espérance, A. (2024). Beyond experiential knowledge: A classification of patient knowledge. Social Theory & Health.)

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

Image generated with ChatGPT 4o using the following prompt: "A scene depicting two individuals side by side. On the left, a person is reading a book or manual, symbolizing theoretical knowledge. On the right, another person is engaged in a hands-on activity, such as fixing a car, cooking a complex dish, or navigating a challenging hiking trail. The person performing the task is confident and skillful, illustrating their experiential expertise gained through direct involvement and personal experience."

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