TY - CHAP
T1 - Opportunities and challenges in the use of personal health data for health research
AU - Bietz, M J
AU - Bloss, C S
AU - Calvert, S
AU - Godino, J G
AU - Gregory, J
AU - Claffey, M P
AU - Sheehan, J
AU - Patrick, K
PY - 2016
Y1 - 2016
N2 - 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.
AB - 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.
KW - mobile health (mHealth) wearable sensors Internet
U2 - 10.1093/jamia/ocv118
DO - 10.1093/jamia/ocv118
M3 - Chapter
SN - 1527-974X\r1067-5027
T3 - Journal of the American Medical Informatics Association
SP - E42-E48
BT - Journal of the American Medical Informatics Association
CY - [Bietz, Matthew J. Gregory, Judith] Univ Calif Irvine, Donald Bren Sch Informat & Comp Sci, Dept Informat, Irvine, CA USA. [Bietz, Matthew J. Bloss, Cinnamon S. Godino, Job G. Patrick, Kevin] Univ Calif San Diego, Ctr Wireless & Populat Hlth Syst, Calit2,
ER -
