The final report from the Health Data Exploration project has been published by the Robert Wood Johnson Foundation!
Health-related data is being tracked more and more as the number of wearable devices and smartphone apps increase. Our report, Personal Data for the Public Good: New Opportunities to Enrich Understanding of Individual and Population Health, examines attitudes towards personal health data from the individuals who track personal health data, the companies involved in self-tracking devices, apps, or services, and the researchers who might use the data.
Three of us in the Department of Informatics at UC Irvine (Scout Calvert, Judith Gregory and I) collaborated with researchers at the California Institute for Telecommunications and Information Technology (Calit2) at UCSD (Kevin Patrick, PI) to produce the report.
Key Findings
- Individuals were very willing to share their self-tracking data for research. However, the dominant condition (57%) for making their PHD available for research was an assurance of privacy for their data. Over 90 percent of respondents said that it was important that the data be anonymous.
- This study showed that the current methods of informed consent are challenged by the ways PHD is being used and reused in research.
- Researchers are enthusiastic about using PHD in research but are most concerned about the validity of PHD and lack of standardization of devices.
The report is available at http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/03/personal-data-for-the-public-good.html