Trust and privacy in the context of user-generated health data

Bibliographic Data

ID5260640
AuthorsKirsten Ostherr (0000-0002-6425-9527, Rice University, corresponding author), Svetlana Borodina (0000-0003-3256-5463, Rice University), Rachel Conrad Bracken (0000-0001-5927-7248, Rice University), Charles Lotterman (Rice University), Eliot Storer (0000-0002-2892-4323, Rice University), Brandon Williams (0009-0003-2972-2699, Rice University)
Year2017
Volume4
Issue1
Publication date2017-06-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueBig Data & Society (JOURNAL)
Journal identifiersISSN: 2053-9517 • E-ISSN: 2053-9517
PublisherSAGE Publications Inc (PUBLISHER)
DOI10.1177/2053951717704673
OpenAlexW2607060815
LanguageEN
Citations received18
References cited32

This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define "user-generated health data" as data captured through devices or software (whether purpose built or commercially available) and used outside of traditional clinical settings for tracking personal health data. The investigators conducted qualitative research through semistructured interviews (n = 32) with researchers, health technology start-up companies, and members of the general public to inquire why and how they interact with and understand the value of user-generated health data. We found significant results concerning new attitudes toward trust, privacy, and sharing of health data outside of clinical settings that conflict with regulations governing health data within clinical settings. Members of the general public expressed little concern about sharing health data with the companies that sold the devices or apps they used, and indicated that they rarely read the "terms and conditions" detailing how their data may be exploited by the company or third-party affiliates before consenting to them. In contrast, interviews with researchers revealed significant resistance among potential research participants to sharing their user-generated health data for purposes of scientific study. The widespread rhetoric of personalization and social sharing in "user-generated culture" appears to facilitate an understanding of user-generated health data that deemphasizes the risk of exploitation in favor of loosely defined benefits to individual and social well-being. We recommend clarification and greater transparency of regulations governing data sharing related to health

Computer security · Data science · Data sharing · Information privacy · Internet privacy · Personalization · Political science · Public health · Public relations · World Wide Web · Computer Science · Focus Groups and Qualitative Methods · Medicine · Mobile Health and mHealth Applications · Privacy, Security, and Data Protection

Tools

Open DOISci-HubOpen Access