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In English

Draft version of the “spetspatient” framework

Authors: Sara Riggare, Therese Scott Duncan, Maria Hägglund. Introduction In the Merriam-Webster dictionary, ‘advocacy’ is defined as: “the act or process of supporting a cause or proposal”. The same source defines ‘activism’ as: “a doctrine or practice that emphasizes direct vigorous action especially in support of or opposition to one side of a controversial issue”. […]

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In English Self-tracking

Tracking of COVID-19

Edit on 16 December 2020: I am now almost back to “normal” (whatever normal is when living with a progressive illness…). Looking forward to relaxing over the holidays. Tracking has probably never been more talked about than right now, during an ongoing global pandemic. Having an interest in self-tracking, I have of course followed the […]

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In English

PhD trajectory update

I figured that an update on my PhD trajectory was in order so here goes:

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In English

“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 I am not often lost for words. However, when the question above was posed to me, I can definitely […]

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In English

Some key aspects of patient-centered research

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:

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In English

What is a ‘spetspatient’?

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 […]

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In English På svenska

Årets medicinsvensk 2018 / Swede of the year in medicine 2018

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 […]

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In English

Walking revolutionised

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 […]

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In English Self-tracking

Ethics and PhD

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 […]

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In English

A small round white pill

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 […]