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

Authors

Matthew J. Bietz, University of California, Irvine
Cinnamon S. Bloss, University of California, San Diego
Scout Calvert, University of Nebraska-LincolnFollow
Job G. Godino, University of California, San Diego
Judith Gregory, University of California, Irvine
Michael P. Claffey, University of California, San Diego
Jerry Sheehan, Montana State University-Bozeman
Kevin Patrick, University of California, San DiegoFollow

Document Type

Article

Date of this Version

2016

Citation

Published in Journal of the American Medical Informatics Association 23 (2016), e42-e48.

doi:10.1093/jamia/ocv118

Comments

Copyright © 2015 by the Authors. Published by Oxford University Press on behalf of the American Medical Informatics Association. Used by permission.

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 hourlong 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.