Study: Californians Think HIEs Worsen Data Privacy, Security

About 40% of Californians say they believe that health information exchanges hurt data privacy and security, according to a study published in the Journal of the American Medical Informatics Association, Health IT Security reports.

For the study, UC-Davis and UC-San Diego researchers in 2013 polled a representative sample of 800 California residents over the phone to gauge their opinions on the privacy of HIEs and research networks. 

Study Findings

Overall, more than 75% of respondents said that privacy and security was the most important factor in their decision to participate in health data exchange.

In addition, of the participants:

• 40.3% said HIEs worsen privacy;
• 42.5% said HIEs worsen security;
• 52.4% said electronic health records worsen privacy; and
• 42.7% said EHRs worsen security (Hall, FierceHealthIT, 4/1).

Meanwhile, the researchers also asked Californians about their views on sharing information for research and found that:

• 70% of respondents strongly or somewhat agreed that an individual's right to control their health information trumps the potential benefits of medical research; and
• 50% said they strongly or somewhat agreed that the potential social societal benefits of research were more important than privacy.

According to study, respondents were more likely to agree to share their health information if it was de-identified, which "suggests that individuals want control over electronic access to health information."

Further, nearly 45% of respondents said consent should be necessary to electronically access their health information for research, while about 33% said researchers should seek initial permission and follow-up with participants periodically.

The authors concluded, "Understanding of views and preferences regarding electronic sharing of health information and, in particular, the important variation in views between individuals is a prerequisite to the effective design of network governance and acceptance and trust of the network by the public" (Health IT Security, 4/1).