Patient Attitudes on Sharing Their PHI

Survey Pool Survey Pool

Researchers focused on patients already self-generating data. Participants had more education and household income than the general population. The survey also drew slightly more white and Asian participants, fewer Hispanic participants and more females. In total, 465 individuals participated in the UCSD survey conducted from August 1 to September 11, 2013.

Share, but Protect Share, but Protect

While 78 percent of respondents probably or definitely would be willing to share their data, 68 percent would share only if privacy is assured, and more than 90 percent want the data to be anonymous.

Yet, results also show that while privacy as a concept is important to participants, about a third did not see privacy as a major concern. Forty-five percent already have shared their health tracking data with someone. Many respondents, however, don’t want tracked data that they share with their doctor to leave the electronic health records system.

Why Track? Why Track?

Survey participants tend to self-track more for general health and wellness than to manage a chronic condition, according to results. Only 14 percent track primarily for a medical reason. Top factors for data being tracked for general health include exercise, diet, weight, athletic activity and sleep.

Age Differences Age Differences

All surveyed 18-25 year-olds use mobile phone apps to self-track health data, compared with 18 percent of those aged 66 and higher. Respondents track more types of data when using mobile phone apps than Web sites.

Data Ownership Data Ownership

Fifty-four percent believe they own their data, 30 percent think they share ownership with the collecting company, and 4 percent said the company owns the data. About 13 percent said they don’t care. In general, respondents want their data used for the public good, and only 13 percent are adverse to commercial or profit-making use. Fifty-six percent would be “more” or “much more” likely to share data if compensated and 38 percent said it would make no difference.

The View from Researchers The View from Researchers

An accompanying, separate survey of 134 researchers found concerns about the validity of personal health data and lack of standardization of devices used to track health data. Researchers also worry about the privacy of personal health data and the rights of those providing it. Current methods of informed consent are challenged by the ways personal health data are being used and re-used in research.

More Information More Information

For a copy of the survey report, “Personal Data for the Public Good, click here.

A survey of self-selected respondents, most of whom track personal health data via wearable devices, smartphones or Web sites, finds they have strong interest in contributing and using the data for research. Funded by the Robert Wood Johnson Foundation, the Health Data Exploration project at University of California San Diego conducted the survey. UCSD recruited participants through postings on related Web sites, press releases and social media channels including blogs and Tweets. A new report offers interesting findings.


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