Sara Riggare, PhD
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sarariggare.bsky.social
Sara Riggare, PhD
@sarariggare.bsky.social
660 followers 300 following 34 posts
Swedish patient researcher living with #ParkinsonsDisease. #Spetspatient #QuantifiedSelf #PersonalScience #CitizenScience Uppsala University

https://www.riggare.se

https://www.spetspatienterna.se
Posts Replies Media Videos
sarariggare.bsky.social
Lite klickbait-varning på rubriken men en fin artikel tycker jag :)
www.mabra.com/medicin/sara...
Sara drabbades av Parkinsons – tog makten i egna händer
Sara har Parkinsons sjukdom, men är även forskare, föreläsare och något av en banbrytare inom egenvård och digital hälsa.
www.mabra.com
July 2, 2025 at 2:52 PM
sarariggare.bsky.social
We should start distinguishing primary from secondary patient engagement to clarify discourse and improve evaluation and implementation.

www.riggare.se/2025/05/20/a...
A New Framework: Primary and Secondary Patient Engagement
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 doc…
www.riggare.se
May 20, 2025 at 12:29 PM
sarariggare.bsky.social
I write in the BMJ: "Hear my concerns and I will take your recommendations seriously":

www.bmj.com/content/388/...
Hear my concerns and I will take your recommendations seriously
Sara Riggare highlights the importance of trust and dialogue when making treatment decisions I have been living with Parkinson’s disease for four decades and, as a result, am almost fluent in “health...
www.bmj.com
March 5, 2025 at 10:09 PM
sarariggare.bsky.social
Taking meds for #PD sounds simple: just follow Ur prescription, take Ur pills on time, & U’ll be fine. But the reality is far more complicated. I take my meds every 3 hrs just to be able to function & figuring out the right schedule has been a process of trial & error.
www.riggare.se/2025/02/08/m...
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 eve…
www.riggare.se
February 8, 2025 at 10:15 PM
Reposted by Sara Riggare, PhD
susannahrfox.bsky.social
The 1 vs 8,765 infographic quickly spread across the world as an arresting image of patient-led care and can be downloaded in Swedish, English, Spanish, Italian, and German. And now, she's making necklaces: 1 vs 364. @sarariggare.bsky.social is a #RebelHealth icon 💛💙
Necklace made up of almost all blue beads. One yellow bead stands out. There is a silver pendant of the dopamine molecule. Necklace is coiled on top of a light brown dog.
February 6, 2025 at 5:14 PM
sarariggare.bsky.social
Still relevant 12 years later #spetspatient #whoknowsbest

youtu.be/LRqTw1oEybo?...
Who knows best?
YouTube video by Sara Riggare
youtu.be
February 1, 2025 at 10:03 AM
sarariggare.bsky.social
Det är dags för glögg-alignment-chart
December 8, 2024 at 5:54 PM
sarariggare.bsky.social
Revisiting a blog post I wrote 11 years ago: ”Bruised knees and bruised ego” #parkinson #freezingofgait

www.riggare.se/2013/10/25/b...
Bruised knees and bruised ego…
I have a new friend. She can be seen on the photo here and I picked her up in a shop the other day. A few days earlier I had no idea that I would feel the need to pick her up, but there you go, tha…
www.riggare.se
December 2, 2024 at 10:50 PM
sarariggare.bsky.social
Read my latest blog on what a shitty hand in the poker game of life means for #Parkinson

www.riggare.se/2024/11/20/u...
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 …
www.riggare.se
November 20, 2024 at 5:58 PM
sarariggare.bsky.social
Visste du att det kommit en uppdatering av #Helsingforsdeklarationen? Hur kommer det att förändra din forskning?

#FromSubjectToParticipant

www.riggare.se/2024/11/19/u...
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. …
www.riggare.se
November 19, 2024 at 1:15 PM
sarariggare.bsky.social
A post from 2 years ago: ”My 5 top learnings from #tracking my #Parkinson for over a decade”. Let me know what you think, esp if you have #PD #yopd

www.riggare.se/2022/08/11/m...
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 i…
www.riggare.se
November 17, 2024 at 5:28 PM
sarariggare.bsky.social
Posting a blog post I wrote 5 years ago, with reflections on patients’ role in research, what ”real” science is, and who can be a ”proper” researcher. #epistemicinjustice #patientresearcher

www.riggare.se/2019/07/23/b...
“But Sara…”
“But Sara, why would patients want to do research on themselves anyway? Isn’t it better if you all just give your data to a proper researcher?” I think that those who know me will agree that …
www.riggare.se
November 17, 2024 at 11:02 AM
sarariggare.bsky.social
Thanks @dawnrichards.bsky.social !
November 14, 2024 at 9:48 PM
sarariggare.bsky.social
I read an article about self-experimentation in Nature yesterday and decided to write a blog post: www.riggare.se/2024/11/11/s...
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-experimentatio…
www.riggare.se
November 11, 2024 at 7:11 PM
sarariggare.bsky.social
Why is patient involvement important when improving healthcare? I recently read a scientific article that made me see it in a new light

www.riggare.se/2024/08/08/t...
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,…
www.riggare.se
August 8, 2024 at 5:10 PM
sarariggare.bsky.social
Idag ett blogginlägg på svenska: Varför är det egentligen viktigt med patientmedverkan vid utvecklingen av vården? Vad är det som patienter tillför?
www.riggare.se/2024/08/08/d...
Därför är patientmedverkan viktigt i utvecklingen av vården eller “Det verkar besvärligt men om du verkligen vill så kan du få prova”
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 medici…
www.riggare.se
August 8, 2024 at 2:24 PM
sarariggare.bsky.social
New blog post:

www.riggare.se/2024/07/12/c...
“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, w…
www.riggare.se
July 12, 2024 at 4:56 PM
sarariggare.bsky.social
Enkät - Viktigt i vården. Hjälp oss (forskare Uppsala universitet) ta reda på vad som är viktigt för patienter & närstående i vården! Vi vill ha svar både från personer som är i vården sällan och de som är där oftare. Mer info och enkät 👇👇👇. Dela gärna vidare

doit.medfarm.uu.se/bin/kurt3/ku...
Kurt - Webbaserade enkäter
doit.medfarm.uu.se
July 1, 2024 at 7:50 PM
sarariggare.bsky.social
Idag hörs jag (ännu hesare än vanligt) i vetenskapsradion. Kort inslag 06:35, 07:35, 08:35, kan höras via denna länk: sverigesradio.se/artikel/pati...

Längre inslag 12:09 (länk kommer senare)
January 16, 2024 at 6:59 AM
sarariggare.bsky.social
Lyssna och tala om vad ni tycker!
December 4, 2023 at 5:29 PM
sarariggare.bsky.social
Inför första advent kommer här några klargöranden i ett glögg alignment chart
December 2, 2023 at 8:54 AM
sarariggare.bsky.social
Fantastisk text som sätter ord på mina tankar om riskuppskattningar även i Parkinson. Kunskap utan möjlighet att agera kan vara värre än att inte veta alls
November 22, 2023 at 7:28 AM
sarariggare.bsky.social
Tack 🙏 @gullfot.bsky.social !
gullfot.bsky.social gullfot @gullfot.bsky.social · Nov 14
Hörrni ett viktigt announcement: nu finns @sarariggare.bsky.social här. För er som inte känner Sara är hon forskare men framförallt fantastisk intressant och kunnig debattör inom patientfrågor när det gäller kronisk sjukdom. Stark rekommendation på följ med andra ord.
November 14, 2023 at 12:44 PM
sarariggare.bsky.social
Jag pratar Parkinsonforskning i SVT.se : www.svt.se/nyheter/vete...
November 14, 2023 at 12:37 PM