Thesis defense Sara Riggare (Donders series 534)

25 March 2022

Promotor: Prof. dr. B.R. Bloem
Co-promotors: Dr. M. De Groot, Dr. M. Hägglund

Personal science in Parkinson’s disease - a patient-led research study

Parkinson’s disease (PD) is an incurable and complex neurodegenerative condition with highly individualised manifestations and an extremely fluctuating nature. Persons with PD must manage their complicated treatment mostly without support from the healthcare system, which means that effective selfcare is incredibly important. Improvements in selfcare can have positive effects on health and healthcare utilisation but represents an under-researched field.

Personal science is a framework derived from practices of the global Quantified Self community, defined as the practice of exploring personally consequential questions by conducting self-directed N-of-1 studies using a structured empirical approach. The main method for data collection in personal science is self-tracking. Research in this thesis examines how personal science can contribute to optimising selfcare for persons living with PD.

This thesis demonstrates that self-tracking has the potential to enable persons with PD to better understand their own condition and to improve their own treatment, with or without support from healthcare professionals. Potential benefits of personal science also come with burdens. The balance between burdens and benefits can be improved by focusing on tracking positive aspects (“feel-well time”), tracking for a limited time and for specific purposes, and interacting with your data to create feedback loops and learning. A broader adoption of the practices of personal science will probably require dedicated training and education of both patients and healthcare professionals. With increasing focus on personalised medicine combined with growing numbers of individuals with multiple chronic conditions, personal science is likely to become an important complementary field of knowledge creation.