Sara Riggare

Sweden

Age diagnosed: 32 (symptoms at 13)

Specialist interest: Self-care/self-tracking

Click the link to read Sara’s post ‘”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 want to give the people coming after me the map I didn’t have.” 

Having shown symptoms of Parkinson’s since I was 13, I am a dedicated advocate for patient involvement in management and treatment which led me to co-founding Parkinson’s Movement in 2011. I am also completing a doctorate at the Health Informatics Centre, Karolinska Institutet where I am researching methods for ‘digital self-care’ for Parkinson’s.  

Appearing on patient panels at events such as World Parkinson Congress and the British Medical Journal and frequently speaking at Stanford Medicine X and Quantified Self conferences allows me to raise awareness and interest for more actively involving patients in development and research. For my research I use results from my own self-monitoring as a basis, along with work from fellow people with Parkinson’s. Presenting this research to a range of audiences, I have written and contributed to a number of articles which can be found in the ‘Action’ tab. On top of this, I share personal opinions regarding active involvment of patients on my blog that can also be found there.

Research into Parkinson’s Disease needs reform – Contributor to BMJ article, March 13, 2018

Partnering with the Public and Patients in Medical Research

Read Sara’s blog piece here: http://www.riggare.se/2018/09/16/ethics-and-phd/

Featured in article by Gary Hickey: Co-production from proposal to paper: public participation in research

Visit my website: Sara – Not patient but im-patient, for my scientific publications, click here.

Founder of the Parkinson’s Research Advocacy Group

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