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

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dc.citation.journalTitleBig Data & Societyen_US
dc.contributor.authorOstherr, Kirstenen_US
dc.contributor.authorBorodina, Svetlanaen_US
dc.contributor.authorBracken, Rachel Conraden_US
dc.contributor.authorLotterman, Charlesen_US
dc.contributor.authorStorer, Elioten_US
dc.contributor.authorWilliams, Brandonen_US
dc.date.accessioned2017-05-03T21:11:46Zen_US
dc.date.available2017-05-03T21:11:46Zen_US
dc.date.issued2017en_US
dc.description.abstractThis 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.en_US
dc.identifier.citationOstherr, Kirsten, Borodina, Svetlana, Bracken, Rachel Conrad, et al.. "Trust and privacy in the context of user-generated health data." <i>Big Data & Society,</i> (2017) Sage: https://doi.org/10.1177/2053951717704673.en_US
dc.identifier.doihttps://doi.org/10.1177/2053951717704673en_US
dc.identifier.urihttps://hdl.handle.net/1911/94153en_US
dc.language.isoengen_US
dc.publisherSageen_US
dc.rightsThis article is distributed under the terms of the Creative Commons Attribution 4.0 License, which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed.en_US
dc.rights.urihttps://creativecommons.org/licenses/by/4.0/en_US
dc.subject.keywordbig dataen_US
dc.subject.keywordhealth dataen_US
dc.subject.keywordterms and conditionsen_US
dc.subject.keywordtrusten_US
dc.subject.keywordprivacyen_US
dc.subject.keywordsharingen_US
dc.titleTrust and privacy in the context of user-generated health dataen_US
dc.typeJournal articleen_US
dc.type.dcmiTexten_US
dc.type.publicationpublisher versionen_US
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