My colleague Charlotte Blease and myself have written about spetspatients in the British Medical Journal (BMJ):
Category: My research
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WPC2023: “To track or not to track”
In July I was in Barcelona to attend the 6th World Parkinson Congress or WPC. As expected, it was a few very intense days with many impressions and interactions. One of my commitments was to speak in a morning plenary session. It was the start of day 2 of the conference and there were people sitting on most of the 1 750 chairs in the room. I was proud and honoured to be part of the impressive lineup.
Linda and I preparing for our session. The main title of the session was “Tracking Disease Progression in Parkinson’s: Why and How?” and it was chaired by neurologist and movement disorder specialist Cecilia Peralta from Argentina together with Linda K Olson who is a physician and person with Parkinson’s, as well as a triple amputee. You can read more about Linda on her website here, and in her captivating memoire “Gone: A Memoir of Love, Body, and Taking Back My Life”. Trust me, you do want to read more about her!
The full lineup and program of the WPC morning plenary “Tracking Disease Progression in Parkinson’s: Why and How?” The first speaker was professor Bas Bloem from Radboud University in the Netherlands who did an excellent job outlining why we should track PD. Equally excellent were the presentations by professor David Standaert and professor Thilo van Eimeren covering blood and tissue-based tests and imaging to track PD.
A recording of my talk, with the title “To track or not to track” can be found below. It is filmed with a mobile phone so the audio is not perfect. I recommend turning on the captions (in English).
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Jag har fått ett pris! / I have received an award!
(For English, scroll down)
Idag fick jag ett brev från Parkinsonfonden: Jag har tilldelats Elsa och Inge Anderssons pris 2023 för bästa doktorsavhandling inom parkinsonområdet. Priset är på 100 000 kr, varav 25 000 är ett personligt stipendium och resterande del ska gå till min fortsatta forskning inom området.
Jag är glad och väldigt stolt över denna ära! Jag ser utmärkelsen som en signal om att jag är på rätt väg och att jag har ett ansvar att se till att min forskning ska komma till verklig nytta. Detta ansvar tar jag på allra största allvar! Tack Parkinsonfonden!
In English:
Today I received a letter from the Swedish Parkinson Foundation: I have been awarded the Elsa and Inge Andersson Prize 2023 for the best doctoral thesis in the field of Parkinson. The prize is 100,000 SEK, of which 25,000 is a personal scholarship and the remaining part will go to my continued research in the field.
I am happy and very proud of this honor! I see the award as a signal that I am on the right track and I have a responsibility to ensure that my research results in real benefit. I take this responsibility very seriously!
A big thank you to the Swedish Parkinson Foundation!
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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 -
PhD thesis print proof
PhD thesis print proof! Checking the print proof of my PhD thesis makes me very happy! Huge thanks to supervisors supreme Bas Bloem, Maria Hägglund, Martijn de Groot! I am looking forward to my thesis defence on 25 March 2022.
Sign up for updates: https://www.riggare.se/updates-on-phd-thesis-and-defence/
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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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PhD trajectory update
I figured that an update on my PhD trajectory was in order so here goes:
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