Tag: Quantified Self
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How I became a researcher in personal science
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!
Link number 1, from February of 2010:
Link number 2, from December 2010:
Link number 3, from April 2011:
Link number 4, from April 2011:
Link number 5, from September 2012:
Link number 6, from October 2012:
First time I wrote about my image with 8 765 blue dots and 1 red:
Link number 7, from October 2013:
Link number 8, from May 2014:
Link number 9, from October 2014:
Link number 10, from October 2015:
Link number 11, from January 2016:
Link number 12, from March 2016:
Link number 13, from August 2016:
Link number 14, from August 2017:
Link number 15, from September 2018:
Link number 16, from January 2019:
Link number 17, from July 2019:
Link number 18, from July 2020:
Link number 19, from November 2020:
Link number 20, from March 2022:
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My 5 top learnings from tracking my Parkinson for over a decade
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!
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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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Spetspodden på Vitalis 2019
Under Vitaliskonferensen om ehälsa i Göteborg 2019 lanserade vi Spetspodden – en podcast av, med och om spetspatienter. Här finns länkar till de första avsnitten.
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Quantified Self for Parkinson (at WPC 2016)
Kent Unruh:
Jasmine Sturr, Full version:
Excerpt: using nicotine vape for managing dyskinesias:
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“Doktorn i fickan” – Kropp & Själ i P1
Jag medverkade i P1:s hälsojournalistiska program Kropp & Själ, se beskrivning och länk nedan.
Du kan kontrollera din sömn, mäta blodtryck och EKG eller ta reda på lunchens näringsvärde. De senaste åren har marknaden för hälsoappar i mobiltelefonen exploderat. Vad ska vi med den insamlade datan till? Och hur kan vården dra nytta av den digitala utvecklingen?
I framtiden kommer sjukvården att kunna använda sig av den data som vi samlar in genom våra telefoner, tror Gary Wolf, som är en del av nätverket quantified self, en rörelse för människor med intresse för egenmätningar världen över.Även om vården släpar efter i den tekniska utvecklingen görs försök för att ta fram appar som kan hjälpa patienter med svåra sjukdomar. Doktoranden Sara Riggare, som själv har parkinson, har utvecklat en app som hjälper parkinsonpatienter att mäta stelhet genom att röra vid mobilskärmen. Idag är det många ärenden som går att sköta via telefonen, men vissa saker kräver ett möte ansikte mot ansikte, som att gå till doktorn till exempel. Men sedan i våras har det blivit ändring på det, vi har besökt Sveriges första virtuella vårdcentral.
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Lena increased her daily “feel-well-time” from three to ten hours
For the last year or so I’ve been working in a project funded by the Swedish government’s national strategy to treat and prevent chronic diseases. We call the project “Dagens patient” (“Patient daily” in English) and you can read about it here. “Dagens patient” is based on my work around self-monitoring my Parkinson’s and we currently work with people with Parkinson’s and MS, exploring different aspects of self-monitoring together. One member of our Parkinson’s group has done some really interesting things and she talks about it in the video below. It is in Swedish but has English subtitles. Let me know what you think about it!
