The self-tracking patient: Sara Riggare’s case study in Parkinson's Disease

Sara Riggare's life changed when she was diagnosed with Parkinson’s disease at the age of 32, after nearly two decades of unexplained symptoms. When she was 13 she noticed her inability to move her feet while others clapped and stomped at a folk music concert. Initially misdiagnosed with dystonia, it wasn’t until years later that a neurologist gave her the correct diagnosis.

Sara, an engineer by training, embarked on a mission to empower not only herself but also others in the Parkinson's community. She enrolled in a Master's program in Health Informatics at the Karolinska Institute, where she focused on using technology to improve patient care and self-management for those living with chronic conditions. She developed smartphone apps that allow patients to monitor their symptoms and medication schedules. Her innovations, born from her own need to manage her condition, provide valuable tools for self-tracking and data collection. “My mission is to give individual patients the tools to improve their own healthcare experience… I need to show that my research can change things for me and for the world, and that it can make an immediate benefit, not in 10 or 20 years.”

In 2018, her work was recognized when Fokus Magazine named her "Swede of the Year in Medicine," celebrating her contributions to reshaping the patient experience. The jury highlighted her ability to inspire others and her determination to change the narrative around living with a chronic illness. In March 2022, Sara successfully defended her PhD thesis, becoming the first person in the world -and still the only one- to earn a PhD in Parkinson’s disease while living with the condition.

Sara's research at Radboud University Medical Center under the guidance of Professor Bas Bloem focuses on personal observations as tools for improving chronic disease management. In Sara’s own words, “Self-tracking is, in my opinion, the most powerful weapon I can wish for in my battle against Parkinson’s and I will explain why.” She advocates for patient rights to access their medical data, believing that knowledge is essential for individuals to take ownership of their health. Beyond her technological contributions, Sara actively engages with the global Parkinson's community, serving on the Patient Panel of the British Medical Journal and participating as an ambassador for the World Parkinson Congress. Through her blog, Not patient but im-patient, she shares insights, fostering a sense of community among PD patients.

For more information:

- Video of Thesis Defense:
https://www.riggare.se/2022/05/12/video-from-my-thesis-defence/
https://www.riggare.se/2022/03/28/on-this-day-10-years-ago/
- PhD Thesis:
https://repository.ubn.ru.nl/handle/2066/246940

https://www.youtube.com/watch?v=qNnh1n4Yu9c