Experiences of Donating Personal Data to Mental Health Research: An Explorative Anthropological Study

Biomedical Informatics Insights
Joanna Sleigh

Abstract

Technological developments, such as the advent of social networking sites, apps, and tracking 'cookies', enable the generation and collection of unprecedented quantities of rich personal and behavioural data, opening up a vast new resource for mental health research. Despite these non-traditional health-related data already forming a vital foundation of many new research avenues, little analysis has been done focusing on the experiences, motivations, and concerns of the individuals already engaged in data sharing and donation practices. This explorative study aims to investigate the experiences of individuals voluntarily donating their data to mental health research, specifically through the open data initiative OurDataHelps.org, which aims to develop effective suicide prevention tools. Qualitative semi-structured interviews and participant observation were used on a small sample of participants, yielding 3 key findings: (1) The relationship between participants and their data traces fluctuated between unconscious agency and hyper awareness through curatorship. (2) Despite having concerns about privacy and surveillance, participants were driven by altruistic motivations to engage with health researchers valued by their communit...Continue Reading

References

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Citations

Nov 24, 2020·Current Psychiatry Reports·Jennifer NicholasMark E Larsen

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Software Mentioned

Waoo
Qntfy
Runkeeper
OurDataHelps
Our Data Helps
Tidepool

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