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Health Data Exploration report published

The final report from the Health Data Exploration project has been published by the Robert Wood Johnson Foundation!

Personal Data Report CoverThree EVOKE members – Dr. Matthew Bietz, Dr. Judith Gregory, and Dr. Scout Calvert – collaborated with researchers at the California Institute for Telecommunications and Information Technology (Calit2) at UCSD (Kevin Patrick, PI) to conduct the research and produce the report.

About the Report: 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.

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.

Press release: http://www.rwjf.org/en/about-rwjf/newsroom/newsroom-content/2014/03/report–finds-people-willing-to-share-personal-health-data.html

Full report: http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/03/personal-data-for-the-public-good.html

Health Data Exploration Project: http://www.calit2.net/hdexplore/

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