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J Am Med Inform Assoc. 2016 Apr;23(e1):e42-8. doi: 10.1093/jamia/ocv118. Epub 2015 Sep 2.

Opportunities and challenges in the use of personal health data for health research.

Author information

1
Department of Informatics, Donald Bren School of Information and Computer Sciences, University of California, Irvine, California, USA Center for Wireless and Population Health Systems, Calit2, University of California, San Diego, California, USA.
2
Center for Wireless and Population Health Systems, Calit2, University of California, San Diego, California, USA Department of Psychiatry, School of Medicine, University of California, San Diego, California, USA Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, California, USA.
3
Louise M. Darling Biomedical Library, University of California, Los Angeles, California, USA.
4
Center for Wireless and Population Health Systems, Calit2, University of California, San Diego, California, USA Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, California, USA.
5
Department of Informatics, Donald Bren School of Information and Computer Sciences, University of California, Irvine, California, USA.
6
Department of Psychology, University of California, San Diego, California, USA.
7
Information Technology Center, Montana State University, Bozeman, Montana, USA.
8
Center for Wireless and Population Health Systems, Calit2, University of California, San Diego, California, USA Department of Family Medicine and Public Health, School of Medicine, University of California, San Diego, California, USA kpatrick@ucsd.edu.

Abstract

OBJECTIVE:

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.

KEYWORDS:

Internet of Things (IoT); big data; data sharing; mobile health (mHealth); personal data; wearable sensors

PMID:
26335984
PMCID:
PMC4954630
DOI:
10.1093/jamia/ocv118
[Indexed for MEDLINE]
Free PMC Article

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