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

• Published in: Journal of the American Medical Informatics Association : JAMIA Vol. 23; no. e1; pp. e42 - e48
• Main Authors: Bietz, Matthew J, Bloss, Cinnamon S, Calvert, Scout, Godino, Job G, Gregory, Judith, Claffey, Michael P, Sheehan, Jerry, Patrick, Kevin
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 01.04.2016
• Subjects: Biomedical Research; Datasets as Topic; Female; Health Records, Personal; Humans; Information Dissemination; Interviews as Topic; Male; Research and Applications; Surveys and Questionnaires; Telemedicine; mobile health (mHealth); Internet of Things (IoT); wearable sensors; big data; data sharing; personal data
• ISSN: 1067-5027; 1527-974X
• DOI: 10.1093/jamia/ocv118

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.