Exploring crowdsourced self-care techniques: A study on Parkinson’s disease

Abstract

Living with Parkinson’s Disease introduces a range of significant challenges into one’s daily life. While medical interventions exist to overcome some of these challenges, patient self-care techniques often form an essential complement to the treatments recommended by medical doctors. Knowledge on these self-care techniques often originates from those living with Parkinson’s themselves or their close caregivers, as they have the knowledge and experience required to assess self-care techniques. This so-called ‘patient knowledge’ is usually exchanged in peer meetings or discussion forums. Although vital to the Parkinson’s Disease community, this information is often difficult to access due to its unstructured format and the difficulty of navigating through online forums. We present an online tool that allows for contributing, assessing, and finally discovering Parkinson’s Disease self-care techniques. The custom discovery tool was populated with self-care knowledge by over 300 people with Parkinson’s and dozens of their carers, spanning areas such as daily well-being and using assistive equipment. Then, we invited patients to explore the discover features in a smaller scale trial. While well-received, our deployment highlighted several challenges that we further discuss in this paper. Overall, our study contributes to crowdsourced digital health solutions and provides both design and research implications to this challenging domain with a vulnerable user group.