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…
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!
On this day 10 years ago, March 28th 2012, I was registered as a PhD student at Karolinska Institutet. My research plan, which was going to guide my work over the following years, was titled “Personal observations as a tool for improvements in chronic disease”. Reading through that plan today, on the 10 year anniversary,…… Continue reading On this day 10 years ago…
PhD thesis defence I will defend my thesis on Friday 25 March 2022 at 10:30 am CET at the aula of the Radboud University, Nijmegen. Members of the Doctoral Examination Board are: Jan Kremer, Effy Vayena, Tamar Sharon, Marina Noordegraaf, Sabine Oertelt and Teus van Laar. You can follow the livestream << online here >>.…… Continue reading Personal science day 25 March 2022
A few weeks into the new year and I am happy to announce that my PhD thesis is now available! Below you can find links for downloading, some tips on how to read the thesis, and information about the thesis defence ceremony. Also, don’t miss the chance to ask me questions about my thesis via…… Continue reading My PhD thesis is now available!
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”.…… Continue reading Draft version of the “spetspatient” framework
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…… Continue reading Tracking of COVID-19
“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…”
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