Most Individuals Would Share Self-Tracked Health Data for Research

TOPIC ALERT:

The majority of consumers who use self-tracking devices would be willing to share their personal health data for public research projects if their privacy were protected, according to a report by the California Institute for Telecommunications and Information Technology, MobiHealthNews reports (Dolan, MobiHealthNews, 3/13).

Report Details

The report was part of the Health Data Exploration project and was funded by the Robert Wood Johnson Foundation.

Researchers interviewed consumers, researchers and companies that sell self-tracking devices, apps or services (Hall, FierceHealthIT, 3/14). According to EHR Intelligence, more than 400 individuals were surveyed (Murphy, EHR Intelligence, 3/14).

The study aimed to determine:

  • Whether data collected by self-tracking health tools would be useful to researchers; and
  • If the individuals whose data are being collected would be comfortable sharing such information with researchers.

Findings

Among the individuals who use self-tracking devices:

  • 57% reported that privacy was the most important factor when considering whether to share their data with researchers; and
  • More than 90% said it was important that their personal health data remain anonymous.

Among the more than 100 health care researchers who were surveyed:

  • 89% said they agreed or strongly agreed that self-tracking health data would be useful for research;
  • 46% said they previously had used self-tracking health data in their research; and
  • About 23% said they previously had worked with companies that offer self-tracking health tools (MobiHealthNews, 3/13).

Among the surveyed companies, most said that using self-tracking data for research was not their primary business focus. Some companies said they would be willing to share data with researchers, but such partnerships had been challenging in the past.

According to the report, the main obstacles to the sharing of such health data included:

  • Data quality;
  • Willingness to share data;
  • Informed consent; and
  • Privacy and data ownership (FierceHealthIT, 3/14).

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