Survey Finds Patients View HIEs As A Privacy Threat
By Katie Wike, contributing writer
Patients who responded to a recent survey indicate a belief that health information exchanges are a threat to privacy and will worsen security.
Researchers from UC Davis and UC San Diego interviewed 800 California residents with regards to their thoughts on health information exchanges (HIEs) and the privacy HIEs can provide. According to the results, published in the Journal of the American Medical Informatics Association, two of five respondents thought HIEs hurt data privacy and security.
iHealth Beat reports researchers also discovered, “Overall, more than 75 percent said privacy and security was the most important factor in their decision to participate in health data exchange.” Furthermore:
- 40.3 percent of Californians said HIEs worsen privacy
- 42.5 percent said HIEs worsen security
- 52.4 percent said EHRs worsen privacy
- 42.7 percent said EHRs worsen security
“Electronic networks for healthcare and research have the potential to enhance knowledge about cost effective, high quality patient-centered care and the efficient conduct of clinical research,” wrote researchers.
According to Health IT Security, over three quarters of Californians surveyed said privacy and security were very important when sharing unidentified data through an electronic research network. Sixty-seven percent of respondents said that being able to trust the organization was very important, while just over half stated that seeing their information beforehand was a top priority.
Forty-five percent agreed that permission should be required to access their information electronically for research purposes. One in three believed medical researchers should get their general permission and also periodically reach out to ensure they still agree to their data being shared.
Seventy percent of respondents strongly or somewhat agreed that an individual's right to control their health information trumps the potential benefits of medical research. In addition, 50 percent said they strongly or somewhat agreed that the potential social societal benefits of research were more important than privacy.
“This suggests that individuals want control over electronic access to health information,” the report’s authors wrote. “They overwhelmingly believe it is important to be asked permission for both research and healthcare uses but there are greater differences in beliefs about consent.”