{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T09:56:43Z","timestamp":1777456603215,"version":"3.51.4"},"reference-count":64,"publisher":"SAGE Publications","issue":"1","license":[{"start":{"date-parts":[[2017,4,17]],"date-time":"2017-04-17T00:00:00Z","timestamp":1492387200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000873","name":"Andrew W. Mellon Foundation","doi-asserted-by":"publisher","award":["Rice University Humanities Research Center"],"award-info":[{"award-number":["Rice University Humanities Research Center"]}],"id":[{"id":"10.13039\/100000873","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Big Data &amp; Society"],"published-print":{"date-parts":[[2017,6]]},"abstract":"<jats:p>This study identifies and explores evolving concepts of trust and privacy in the context of user-generated health data. We define \u201cuser-generated health data\u201d 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\u2009=\u200932) 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 \u201cterms and conditions\u201d 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 \u201cuser-generated culture\u201d 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.<\/jats:p>","DOI":"10.1177\/2053951717704673","type":"journal-article","created":{"date-parts":[[2017,4,17]],"date-time":"2017-04-17T06:13:31Z","timestamp":1492409611000},"update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":53,"title":["Trust and privacy in the context of user-generated health data"],"prefix":"10.1177","volume":"4","author":[{"given":"Kirsten","family":"Ostherr","sequence":"first","affiliation":[{"name":"Rice University, USA"}]},{"given":"Svetlana","family":"Borodina","sequence":"additional","affiliation":[{"name":"Rice University, USA"}]},{"given":"Rachel Conrad","family":"Bracken","sequence":"additional","affiliation":[{"name":"Rice University, USA"}]},{"given":"Charles","family":"Lotterman","sequence":"additional","affiliation":[{"name":"Rice University, USA"}]},{"given":"Eliot","family":"Storer","sequence":"additional","affiliation":[{"name":"Rice University, USA"}]},{"given":"Brandon","family":"Williams","sequence":"additional","affiliation":[{"name":"Rice University, USA"}]}],"member":"179","published-online":{"date-parts":[[2017,4,17]]},"reference":[{"key":"bibr1-2053951717704673","unstructured":"Agus DB (2016) Give up your data to cure disease.\n                      The New York Times\n                      , 6 February."},{"key":"bibr2-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1016\/j.ccs.2015.12.005"},{"issue":"4","key":"bibr3-2053951717704673","first-page":"995","volume":"82","author":"Calo R","year":"2014","journal-title":"The George Washington Law Review"},{"key":"bibr4-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1207\/s15506878jobem4604_6"},{"key":"bibr5-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1200\/JOP.2015.003715"},{"key":"bibr6-2053951717704673","unstructured":"Comey J (2016) Humility, adaptability, and collaboration: The way forward in cyber security.\n                      Speech delivered at FBI\/Fordham University international cyber security conference,\n                      New York City, New York, 27 July 2016. Available at: https:\/\/www.fbi.gov\/news\/speeches\/humility-adaptability-and-collaboration-the-way-forward-in-cyber-security (accessed 1 August 2016)."},{"key":"bibr7-2053951717704673","unstructured":"Comstock J (2016) How consumer health, fitness devices reveal HIPAAS\u2019s blurry lines. Available at: http:\/\/mobihealthnews.com\/content\/how-consumer-health-fitness-devices-reveal-hipaas-blurry-lines (accessed 28 May 2016)."},{"key":"bibr8-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMhle1403384"},{"key":"bibr9-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1038\/538311a"},{"key":"bibr10-2053951717704673","unstructured":"Deering MJ, Siminerio E and Weinstein S (2013) Issue brief: Patient-generated health data and health IT.\n                      Office of the National Coordinator for Health Information Technology\n                      , Washington, D.C., 20 December 2013, pp. 1\u201311. Washington, D.C: Office of the National Coordinator for Health Information Technology."},{"key":"bibr11-2053951717704673","unstructured":"Dockery S (2016) The morning risk report: Study shows deep flaws in health-care cybersecurity.\n                      The Wall Street Journal\n                      , 29 June."},{"key":"bibr12-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/1461444803005002005"},{"key":"bibr13-2053951717704673","unstructured":"Ferguson T, et\u00a0al. (2007)\n                      e-Patients: How they can help us heal healthcare\n                      . Report for Robert Wood Johnson Foundation. Available at: http:\/\/www.e-patients.net\/e-Patients_White_Paper.pdf (accessed 1 August 2016)."},{"key":"bibr14-2053951717704673","first-page":"1466","volume":"9","author":"Fiore-Gartland B","year":"2015","journal-title":"International Journal of Communication"},{"key":"bibr15-2053951717704673","unstructured":"Fitbit (2015) Terms of service. Available at: https:\/\/www.fitbit.com\/legal\/terms-of-service (accessed 28 May 2016)."},{"key":"bibr16-2053951717704673","volume-title":"Security, Territory, Population","author":"Foucault M","year":"2009"},{"key":"bibr17-2053951717704673","unstructured":"Fox S and Duggan M (2013)\n                      Tracking for health\n                      . Report for Pew Research Center. Available at: http:\/\/www.pewinternet.org\/2013\/01\/28\/tracking-for-health\/ (accessed 1 August 2016)."},{"key":"bibr18-2053951717704673","doi-asserted-by":"crossref","first-page":"353","DOI":"10.7551\/mitpress\/9439.003.0023","volume-title":"Revolutionizing Innovation","author":"F\u00fcller J","year":"2016"},{"key":"bibr19-2053951717704673","unstructured":"Garmin (2014) Terms of use. Available at: http:\/\/www.garmin.com\/en-US\/legal\/terms-of-use (accessed 28 May 2016)."},{"key":"bibr20-2053951717704673","doi-asserted-by":"publisher","DOI":"10.2307\/3178066"},{"key":"bibr21-2053951717704673","unstructured":"Health Information and the Law Project (2015) Who owns medical records: 50 state comparison. Report for George Washington University, Hirsh Health Law and Policy Program. Available at: http:\/\/www.healthinfolaw.org\/comparative-analysis\/who-owns-medical-records-50-state-comparison (accessed 1 August 2016)."},{"key":"bibr22-2053951717704673","unstructured":"Internet Society (2012) Global internet user survey 2012. Available at: http:\/\/www.internetsociety.org\/surveyexplorer\/online-privacy-and-identity\/what-are-the-main-reasons-you-accept-the-terms-and-conditions-as-offered-without-reading-them-14\/ (accessed 28 May 2016)."},{"key":"bibr23-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1525\/can.2007.22.4.501"},{"key":"bibr24-2053951717704673","unstructured":"Jawbone (2014) UP terms of use. Available at: https:\/\/jawbone.com\/legal\/up\/terms (accessed 28 May 2016)."},{"key":"bibr25-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/2053951715621569"},{"issue":"1","key":"bibr26-2053951717704673","first-page":"325","volume":"28","author":"Kim N","year":"2014","journal-title":"Harvard Journal of Law and Technology"},{"key":"bibr27-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1038\/nbt.3340"},{"key":"bibr28-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1109\/MPRV.2008.85"},{"key":"bibr29-2053951717704673","volume-title":"Laboratory Life","author":"Latour B","year":"1979"},{"key":"bibr30-2053951717704673","unstructured":"Leaf C (2015) The biggest share in the sharing economy.\n                      Fortune\n                      , 7 August. Available at: http:\/\/fortune.com\/2015\/08\/07\/digital-health-data\/ (accessed 1 August 2016)."},{"key":"bibr31-2053951717704673","volume-title":"The Quantified Self","author":"Lupton D","year":"2016"},{"key":"bibr32-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1089\/tmj.2011.0180"},{"key":"bibr33-2053951717704673","unstructured":"Madden M and Rainie L (2015) Americans\u2019 attitudes toward privacy, security, and surveillance. Report for Pew Research Center. Available at: http:\/\/www.pewinternet.org\/2015\/05\/20\/americans-attitudes-about-privacy-security-and-surveillance\/ (accessed 2 May 2016)."},{"key":"bibr34-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/2053951716650211"},{"key":"bibr35-2053951717704673","unstructured":"Misfit (2015) Misfit terms of use. Available at: http:\/\/misfit.com\/legal\/terms_of_use (accessed 28 May 2016)."},{"key":"bibr36-2053951717704673","first-page":"11","volume":"8","author":"Nafus D","year":"2014","journal-title":"International Journal of Communication"},{"key":"bibr37-2053951717704673","doi-asserted-by":"publisher","DOI":"10.2196\/jmir.2674"},{"key":"bibr38-2053951717704673","unstructured":"National Institutes of Health, Precision Medicine Initiative (2015) About the precision medicine initiative cohort program. Available at: https:\/\/www.nih.gov\/precision-medicine-initiative-cohort-program (accessed 1 August 2016)."},{"key":"bibr39-2053951717704673","doi-asserted-by":"publisher","DOI":"10.7551\/mitpress\/10421.001.0001"},{"key":"bibr40-2053951717704673","first-page":"1701","volume":"57","author":"Ohm P","year":"2010","journal-title":"UCLA Law Review"},{"key":"bibr41-2053951717704673","unstructured":"Ornstein C (2015) Your health records are supposed to be private. They aren\u2019t.\n                      The Washington Post\n                      , 30 December."},{"key":"bibr42-2053951717704673","volume-title":"Medical Visions: Producing the Patient Through Film, Television, and Imaging Technologies","author":"Ostherr K","year":"2013"},{"key":"bibr43-2053951717704673","doi-asserted-by":"publisher","DOI":"10.4159\/harvard.9780674736061"},{"key":"bibr44-2053951717704673","first-page":"595","volume":"17","author":"Pasquale F","year":"2014","journal-title":"Stanford Technology Law Review"},{"key":"bibr45-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1515\/9781400821617"},{"issue":"2","key":"bibr46-2053951717704673","first-page":"1","volume":"2","author":"Pybus J","year":"2016","journal-title":"Big Data & Society"},{"key":"bibr47-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1017\/S1745855206040014"},{"issue":"3","key":"bibr48-2053951717704673","first-page":"1","volume":"2","author":"Raghupathi W","year":"2014","journal-title":"Health Information Science and Systems"},{"key":"bibr49-2053951717704673","volume-title":"Networked: The New Social Operating System","author":"Rainie L","year":"2014"},{"key":"bibr50-2053951717704673","volume-title":"The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-first Century","author":"Rose N","year":"2006"},{"key":"bibr51-2053951717704673","unstructured":"Sarasohn-Kahn J (2014) Here\u2019s looking at you: How personal health information is being tracked and used. 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Available at: https:\/\/www.asc.upenn.edu\/sites\/default\/files\/TradeoffFallacy_1.pdf (accessed 29 July 2016).","DOI":"10.2139\/ssrn.2820060"},{"key":"bibr58-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/0163443708098245"},{"key":"bibr59-2053951717704673","doi-asserted-by":"publisher","DOI":"10.24908\/ss.v12i2.4776"},{"key":"bibr60-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/2053951716654173"},{"key":"bibr61-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1038\/535345a"},{"issue":"7","key":"bibr62-2053951717704673","first-page":"1213","volume":"5","author":"Wilkes JJ","year":"2015","journal-title":"BYU Law Review"},{"key":"bibr63-2053951717704673","unstructured":"Wortham J (2016) We\u2019re more honest with our phones than with our doctors.\n                      The New York Times Magazine,\n                      23 March."},{"key":"bibr64-2053951717704673","doi-asserted-by":"publisher","DOI":"10.1177\/2053951714559253"}],"container-title":["Big Data &amp; Society"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/2053951717704673","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/2053951717704673","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/2053951717704673","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T13:02:20Z","timestamp":1777381340000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/2053951717704673"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2017,4,17]]},"references-count":64,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2017,6]]}},"alternative-id":["10.1177\/2053951717704673"],"URL":"https:\/\/doi.org\/10.1177\/2053951717704673","relation":{},"ISSN":["2053-9517","2053-9517"],"issn-type":[{"value":"2053-9517","type":"print"},{"value":"2053-9517","type":"electronic"}],"subject":[],"published":{"date-parts":[[2017,4,17]]},"article-number":"2053951717704673"}}