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dc.contributor.authorBietz, Matthew J
dc.contributor.authorBloss, Cinnamon S
dc.contributor.authorCalvert, Scout
dc.contributor.authorGodino, Job G
dc.contributor.authorGregory, Judith
dc.contributor.authorClaffey, Michael P
dc.contributor.authorSheehan, Jerry
dc.contributor.authorPatrick, Kevin
dc.date.accessioned2016-01-06T23:12:59Z
dc.date.available2016-01-06T23:12:59Z
dc.date.issued2015-09
dc.identifier.citationBietz, Matthew J., Cinnamon S. Bloss, Scout Calvert, Job G. Godino, Judith Gregory, Michael P. Claffey, Jerry Sheehan, and Kevin Patrick. "Opportunities and challenges in the use of personal health data for health research." Journal of the American Medical Informatics Association (2015): ocv118.en_US
dc.identifier.issn1067-5027
dc.identifier.urihttps://scholarworks.montana.edu/xmlui/handle/1/9477
dc.description.abstractObjective: Understand barriers to the use of personal health data (PHD) in research from the perspective of three stakeholder groups: early adopter individuals who track data about their health, researchers who may use PHD as part of their research, and companies that market self-tracking devices, apps or services, and aggregate and manage the data that are generated. Materials and Methods: A targeted convenience sample of 465 individuals and 134 researchers completed an extensive online survey. Thirty-five hour-long semi-structured qualitative interviews were conducted with a subset of 11 individuals and 9 researchers, as well as 15 company/key informants. Results: Challenges to the use of PHD for research were identified in six areas: data ownership; data access for research; privacy; informed consent and ethics; research methods and data quality; and the unpredictable nature of the rapidly evolving ecosystem of devices, apps, and other services that leave “digital footprints.” Individuals reported willingness to anonymously share PHD if it would be used to advance research for the good of the public. Researchers were enthusiastic about using PHD for research, but noted barriers related to intellectual property, licensing, and the need for legal agreements with companies. Companies were interested in research but stressed that their first priority was maintaining customer relationships. Conclusion: Although challenges exist in leveraging PHD for research, there are many opportunities for stakeholder engagement, and experimentation with these data is already taking place. These early examples foreshadow a much larger set of activities with the potential to positively transform how health research is conducted.en_US
dc.language.isoen_USen_US
dc.publisherOxford University Pressen_US
dc.titleOpportunities and Challenges in the Use of Personal Health Data for Health Researchen_US
dc.typeArticleen_US
mus.citation.extentfirstpageocv118en_US
mus.citation.extentlastpageocv118en_US
mus.citation.journaltitleJournal of the American Medical Informatics Associationen_US
mus.identifier.categoryEngineering & Computer Scienceen_US
mus.identifier.categoryHealth & Medical Sciencesen_US
mus.identifier.doi10.1093/jamia/ocv118en_US
mus.relation.collegeOther Departments & Programsen_US
mus.relation.departmentIT Center.en_US
mus.relation.universityMontana State University - Bozemanen_US
mus.data.thumbpage5en_US


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