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!
(more…)Category: Featured
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On this day 10 years ago…
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, I am genuinely surprised at how close to that plan I have stayed over all this time (see excerpts below).
Background section from my original research plan from March 2012 
Overall purpose from my original research plan from March 2012 Today I am also thinking back to last Friday, March 25th 2022, when I successfully defended my PhD thesis at Radboud Universiteit in Nijmegen, The Netherlands. My thesis is titled “Personal science in Parkinson’s disease: a patient-led research study“, and it can be downloaded here: My PhD thesis is now available! The defence ceremony was live-streamed and I will post a recording of it soon.
Last Friday gave me memories for life and I am still processing everything that happened. I am eternally grateful to all the amazing people that have been part of my PhD journey during this decade and a very special thank you goes to my wonderful supervisors: Bas Bloem, Maria Hägglund, and Martijn de Groot! And to Eli Pollard, who captured the event below as a Live Photo (which I was able to turn into a video). Eli, Per is forever envious of you for taking the best photo of that day! 🙂
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Personal science day 25 March 2022
PhD thesis defenceI 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 >>.You can download my thesis << here >>.Personal science symposium
Later the same day, 3-5 pm CET, there will be an online symposium dedicated to the emerging field of personal knowledge creation. Speakers will include Bas Bloem, Jakob Eg Larsen, Thomas Blomseth Christiansen, Gary Wolf, and myself. The program will be a mix of keynotes, show&tells, Q&A, and a very special announcement… You do not want to miss it! << Sign up here >>What is personal science?
Quoting the Wikipedia entry on the topic: personal science is “using science to solve your own problems“. In my PhD thesis, I define it as “the practice of exploring personally consequential questions by conducting self-directed N-of-1 studies using a structured empirical approach“. This is very much an emerging field and I am sure that the definition will be developed further as we keep working. More importantly, I am really looking forward to seeing the practice of personal science being developed further including concrete examples of how people use it! -
My PhD thesis is now available!
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.
Download PhD thesis here:
Download thesis propositions here:
Tips for reading the thesisIf you’re not used to reading a PhD thesis, it can appear a bit overwhelming. Also, different countries and different universities often have slightly different regulations and recommendations for how a thesis should be structured. For my thesis, I would recommend the following:
- Start with the thesis propositions (separate file for downloading above). It’s a list of, in my case, 7 main insights from my work with a wider perspective at the end.
- Then read the prologue and Chapter 1. It will give you an overview of what I see as the starting points of the research presented in the thesis.
- Next, I would suggest that you skip to Chapter 8, which is a summary of Chapters 2-7. The summary is available in English, Dutch, and Swedish (and I did not write the Dutch translation myself… Thank you Mariëtte and Martijn!). If something in Chapter 8 really sparks your interest, you can go back to the corresponding chapter and read in more detail.
- The final chapter is the most interesting one (at least I think so). That is where I look at all the work and research I have done put together and give my perspectives on what I think it means for the research field and practices. This is presented in the General discussion in Chapter 9. Later in Chapter 9, I also give my view on some Future directions and recommendations. And, unusual for a PhD thesis, I present recommendations for academics and clinicians, as well as for persons with PD.
- For the academically interested, feel free to dive into Chapters 2-7 in more detail!
Dissertation / Thesis defence
Friday 25th March 2022
Recording of the defence ceremony can be found here: My PhD thesis defence -
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”. This post is a follow-up to a pre-congress course on advocacy and activism that was given at the 5th World Parkinson Congress (WPC) in Kyoto June 4-7 2019 (Scott Duncan, Raphael, et al. 2019). The focus of the course was on the more action-oriented concept of activism and the course was based on research from Karolinska Institutet in Stockholm, Sweden. The research has resulted in a framework outlining some of the different roles patients can take when dealing with their health issues. The purpose of this post is to provide a background for and description of the framework as well as outline some of the ways it can be used.
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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 development with great interest, both on a global level, as well as on a national, regional, and local level. My interest on an individual level so far, has mainly been focused on trying to make the right decisions to avoid getting infected with COVID-19.
However, a few days ago, my personal interest in tracking COVID-19 increased, when I started noticing symptoms consistent with a COVID-19 infection. I have since then tested positive for ongoing infection and in this post I want to share a few learnings from my first few days.
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“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 say that I didn’t know what to say for, what at least felt like, a really long time.
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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 thesis before the university went on summer holiday. In the application I aimed for thesis defense in late November, the examinators and the opponent had confirmed their availability and I was starting to look forward to D-day. Of course I was well aware of the potential obstacles that were left to clear. The vetting of an application to defend a doctoral thesis at my university entails two separate parts. The first part checks things like that any of the supervisors (current or previous) have not published anything with any of the examiners or the opponent and that the scientific articles that the applicant wants to include in her thesis are of sufficient quality and extent to be equivalent to at least four years full time work. The main supervisor also submits her statement of the doctoral student’s learning process and development during her time as a doctoral student. The second part of the vetting is dedicated to ethical aspects.
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