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).
I was recently asked a question that I hadn’t been asked before:
How to become a researcher in personal science? Can you describe your process from idea to completed doctor’s degree in personal science?
I replied by making a list of some of the blog posts that I have written during my journey. I started in early 2010 and I got my PhD degree in March 2022. In those 12 years I have learnt a lot, and many of my learnings were things I didn’t know that I didn’t know. Below are the 20 blog posts I have chosen to represent that journey.
Enjoy and let me know your thoughts in the comments!
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 a solution looking for a problem. Of course, most of the time the tech people expect me to help them without any sort of compensation for my time. I guess you can’t blame them for trying but frankly, I am pretty fed up with that kind of attitude. I probably have less patience with these kind of requests these days and of course people contacting me today cannot know that I have been getting literally close to a hundred more or less identical requests for the last 10 years or so…
I sincerely hope that I am wrong but often when some tech entrepreneurs contact me wanting to pitch their idea, I get the feeling that the process has been as follows:
They have come up with a novel idea to somehow quantify/measure movement
They have a brainstorm around potential diseases to use their solution for.
Someone remembers that Parkinson has to do with movement somehow
Next step: convince some funders to back their idea and deliver the solution to patients in need
…….. unfortunately it’s not that simple
Tech companies – do your homework first
My recommendation to all tech startups would be to do a quick search in Google Scholar before starting to reach out to patients with that disease for assistance with their idea/solution. I did a very crude search for Parkinson that yielded A LOT of hits (see image below). I would expect all tech startups with a genuine ambition to help persons living with Parkinson to at least check out the articles on the first few pages.
That way they can learn something about the disease they have chosen to work on and also get a sense for what kind of technology is already available in that field.
A long way to go
Don’t get me wrong, I am not a technology-hater. I genuinely believe that there is a lot of potential in using technology for Parkinson. But technology is just a tool, not a goal in itself and for the full potential to be realised, we need to change the way we develop technology. The following quote from a scientific article that I am one of the authors to illustrates that point:
[…] Our analysis shows that people with PD (PwP) want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm. […]
My final point is that the use of technology for helping people living with complex chronic conditions is actually not a technological problem at all. It is in fact ultimately a problem of business models. Let me offer an example from the field of Parkinson:
Remember the Emma Watch? It came from an innovation program in 2017 where the British young graphic designer Emma is given back her ability to draw through a vibrating bracelet developed by a designer working at Microsoft. The YouTube video (below) has several hundred thousand views and I was sent the link by many of my friends. That was 5 years ago so you might think that this fantastic bracelet should be available to buy now. You would be wrong. “Well, it’s probably in the last stages of pre-market developments then” you may suggest. You would be wrong again. On Microsoft’s webpage for this project, there is information about the prototype featured in the video. But no updates has been made since 2017…
There is no way of knowing how many out of the around 10 million people living with Parkinson around the world could be helped by technology such as the Emma Watch. Because there are currently no sustainable business models for supporting the development of genuinely patient-centered technology.
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, 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 2012Overall 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! 🙂
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 >>.
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!
If 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
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.
