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Donating Health Data to Research: Influential Characteristics of Individuals Engaging in Self-Tracking

Author

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  • Katharina Pilgrim

    (Management and Innovation in Health Care, Faculty of Management, Economics and Society, Witten/Herdecke University, Alfred-Herrhausen-Str. 50, 58455 Witten, Germany)

  • Sabine Bohnet-Joschko

    (Management and Innovation in Health Care, Faculty of Management, Economics and Society, Witten/Herdecke University, Alfred-Herrhausen-Str. 50, 58455 Witten, Germany)

Abstract

Health self-tracking is an ongoing trend as software and hardware evolve, making the collection of personal data not only fun for users but also increasingly interesting for public health research. In a quantitative approach we studied German health self-trackers (N = 919) for differences in their data disclosure behavior by comparing data showing and sharing behavior among peers and their willingness to donate data to research. In addition, we examined user characteristics that may positively influence willingness to make the self-tracked data available to research and propose a framework for structuring research related to self-measurement. Results show that users’ willingness to disclose data as a “donation” more than doubled compared to their “sharing” behavior (willingness to donate = 4.5/10; sharing frequency = 2.09/10). Younger men (up to 34 years), who record their vital signs daily, are less concerned about privacy, regularly donate money, and share their data with third parties because they want to receive feedback, are most likely to donate data to research and are thus a promising target audience for health data donation appeals. The paper adds to qualitative accounts of self-tracking but also engages with discussions around data sharing and privacy.

Suggested Citation

  • Katharina Pilgrim & Sabine Bohnet-Joschko, 2022. "Donating Health Data to Research: Influential Characteristics of Individuals Engaging in Self-Tracking," IJERPH, MDPI, vol. 19(15), pages 1-12, August.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:15:p:9454-:d:878119
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    References listed on IDEAS

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    1. Anya Skatova & James Goulding, 2019. "Psychology of personal data donation," PLOS ONE, Public Library of Science, vol. 14(11), pages 1-20, November.
    2. Melanie Swan, 2009. "Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking," IJERPH, MDPI, vol. 6(2), pages 1-34, February.
    3. Budzinski, Oliver & Schneider, Sonja, 2017. "Smart Fitness: Ökonomische Effekte einer Digitalisierung der Selbstvermessung," Ilmenau Economics Discussion Papers 105, Ilmenau University of Technology, Institute of Economics.
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