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

Katharina Pilgrim and Sabine Bohnet-Joschko
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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

IJERPH, 2022, vol. 19, issue 15, 1-12

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.

Keywords: health self-tracking; data donation; data sharing; quantified self; mobile tracking (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (1)

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