Tag: patient researcher

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.

“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

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”

“Vem mäter din hälsa?” – jag blev intervjuad av SMART Psykiatri

Jag blev nyligen intervjuad av Daniel Leksell på SMART Psykiatri, läs via länken: https://www.smartpsykiatri.se/nyheter/vem-mater-din-halsa eller nedan. Härom veckan skrev Lotta Borg Skoglund en text om precisionsmedicin. För att fortsätta fördjupa och nysta i det här ämnet har SMART Academy fått äran att intervjua Sara Riggare, patientforskare och spetspatient med Parkinsons sjukdom. Sara Riggare är i…… Continue reading “Vem mäter din hälsa?” – jag blev intervjuad av SMART Psykiatri

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

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/