Personal digital health in Parkinson’s disease: Case histories and commentary

Published by parkython on

Kevin Krejci, Parkython volunteer and author of this post, was the subject of a research paper published recently in Sage Journals, titled “Personal digital health in Parkinson’s disease: Case histories and commentary“. Other subjects included friend of Parkython and fellow WPC Ambassador, Sara Riggare. The paper depicts our accounts of self-tracking and uses of digital health in Parkinson’s Disease.

The paper references my series of Quantified Self talks, and a story published in 2016 in the Pacific Standard, “Fighting PD with Exercise, Nutrition, Peer Power, Sleep, Data, and a Few Other Tricks
One of my favorite images by Sara Riggare that capture the reality that PwP spend less than one hour per year with their neurologist (if they’re lucky), then all the other hours on their own in self-care.
The study also references many research published by Sara on the topic of digital health, and the need to include PwP in the dialog with researchers and clinicians. The above illustration is from her paper “A Long Way to Go: Patient Perspectives on Digital Health for Parkinson’s Disease”

Conclusion of This Paper

The unique nature of PD has made it an ideal clinical space for the use of digital health. David Walden’s case was an early example of how personal digital health could improve the health outcomes of those with PD. Kevin Krejci’s case reflects the move towards automation of tracking and how the field is decreasing the burden of tracking. Presently, Sara Riggare is researching the process of PD self-experimentation in which she highlights the fact that the movement is becoming more sophisticated and targeted in terms of what data is being generated, which in turn produces findings with increasingly valuable insights.13 It is reasonable to suspect that as more meaningful insights are created and more technological advances occur, self-tracked findings may be used in clinical settings more often and potentially guide physicians and patients alike in making more informed care decisions.

Finally, the potential impact of self-tracking and self-experimentation practices in scientific inquiries in the digital health domain is great. This arena requires patient input and personal digital health efforts, especially in the case of patients with PD, who inherently have the engagement needed to ensure patient input and compliance to their own protocols. The combination of these features may produce both collective scientific inquiry and enhanced medical care for patients. We respect and value the efforts of self-trackers like those chronicled in this article and we encourage researchers and patients alike with PD and other diseases that carry the potential for self-inquiry to consider these practices and develop in their own studies.


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