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”

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

“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?”

WPC2023: “To track or not to track”

In July I was in Barcelona to attend the 6th World Parkinson Congress or WPC. As expected, it was a few very intense days with many impressions and interactions. One of my commitments was to speak in a morning plenary session. It was the start of day 2 of the conference and there were people…… Continue reading WPC2023: “To track or not to track”

Patients’ shift of perspective (animation)

How I became a researcher in personal science

I was recently asked a question that I hadn’t been asked before: How to become a researcher in personal science? Can you describe your process from idea to completed doctor’s degree in personal science? I replied by making a list of some of the blog posts that I have written during my journey. I started…… Continue reading How I became a researcher in personal science

I can’t take yet another solution looking for a problem…

I have long since stopped counting the number of tech companies that have contacted me over the years to get me to help with what they are convinced is the app/device/platform/system that millions of persons with Parkinson all around the world are just waiting for. The absolute majority of the tech people were proudly demonstrating…… Continue reading I can’t take yet another solution looking for a problem…

My 5 top learnings from tracking my Parkinson for over a decade

I have more than a decade of experience from tracking my Parkinson’s disease (PD) and I want to share my 5 most important learnings. Hopefully this can contribute to the increasing interest in tracking for PD by adding a bit of nuance to the, often very data- /research- /doctor-centric discussions. Do let me know what you think by commenting on this post!

My PhD thesis defence

Sara Riggare, PhD (Photo by Helena Conning)

Video https://youtu.be/aLw-ZL8_Xd0 PhD thesis https://www.riggare.se/2022/01/21/my-phd-thesis-is-now-available/

Video https://youtu.be/aLw-ZL8_Xd0 PhD thesis https://www.riggare.se/2022/01/21/my-phd-thesis-is-now-available/