“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 I am not often lost for words. However, when the question above was posed to me, I can definitely…… Continue reading “But Sara…”
It is a truth universally acknowledged that many patients no longer settle for contributing to medical research only as participants in research studies. Over the last decade or so, patients have increasingly made their voices heard in all nooks and crannies of the research process. Some of my favourite examples include: Tom Isaacs, who was…… Continue reading Some key aspects of patient-centered research
My non-Swedish speaking friends may have been wondering what I have been up to lately. And it’s a fair question, since I haven’t been blogging much in English for a while. For the last two years or so, I have been leading a project aiming to change the perception of patients, both among healthcare professionals…… Continue reading What is a ‘spetspatient’?
Jag utsågs av nyhetsmagasinet Fokus i januari 2019 till årets medicinsvensk 2018 med följande motivering: Att vara patient kan vara detsamma som att känna sig maktlös. Men så behöver det inte vara. Årets medicinsvensk är civilingenjör i kemi och doktorand i hälsoinformatik. Hon använder sin kunskap för att sätta makt i händerna på patienter, inklusive sig…… Continue reading Årets medicinsvensk 2018 / Swede of the year in medicine 2018
Tuesday last week, I got myself a new friend. I have namned him Potemkin and you can see him in the photo here, being examined by another good friend of mine, Shiva the cat. We had no idea what a suitable name we gave him, he really is a “god of destruction”. Just come to…… Continue reading Walking revolutionised
Background A few days ago I had some disappointing news. I have been working on my PhD in the area of digital selfcare and self-tracking in Parkinson’s disease since 2012, which is probably starting to be a bit too long. I was therefore very happy to be able to submit my application to defend my…… Continue reading Ethics and PhD
Every morning I have my phone alarm set to ring at 6 am. Every morning, weekday or weekend, workday or holiday, because at 6 am I take my first dose of medication. I take six different pills for my Parkinson’s disease, one to make up for not having a thyroid and one contraceptive. I prepare…… Continue reading A small round white pill
Today I learnt that Tom Isaacs, President and co-founder of the Cure Parkinson’s Trust died very suddenly and unexpectedly yesterday morning. Tom is (yes, he still is) one of the most well-known PwP (people with Parkinson’s) in the world and has contributed so much to the global PD community. The world has lost an amazing…… Continue reading The finest compliment I ever had