Healthcare organizations must address consumers' concerns about individual control and privacy of their information to make health information exchanges (HIEs) and distributed research networks work, according to new research published this week in the Journal of the American Medical Informatics Association.
For the study, researchers from the University of California, Davis and the University of California, San Diego polled 800 randomly selected Californians in early 2013 to gather their views about the privacy and security of an electronic HIE, a research network and whether attitudes differed between the two. More than three-quarters of respondents, who were contacted by phone, rated security and privacy the most important factor in their willingness to participate.
The researchers found that 40.3 percent of respondents think an HIE worsens privacy while 42.5 percent believe it worsens security. More than half of respondents (52.4 percent) believe EHRs worsen privacy and 42.7 percent believe EHRs worsen security.
The respondents placed roughly equal value on protecting individual privacy and societal benefit. However, 69.8 percent strongly or somewhat agreed that individual control is more important than societal benefit.
Organization type was an important factor for the respondents, as they were most likely to consent if asked by a hospital and least likely if asked by an insurance company.
The vast majority would require permission to share data for both healthcare and research (83.7 percent). However, respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare.
A proposed new version of the Consumer Privacy Bill of Rights Act puts more emphasis on the collection of personal data, while HIPAA has been more concerned with the disclosure of information, Indiana University law professor Nicolas Terry writes in a Health Affairs blog post.
"Potentially, it may also clash with the ONC strategy of dramatically increasing data liquidity in order to promote interoperability," Terry says.
Meanwhile, a proposed bill in New York would make it a felony to film patients receiving medical treatment without prior consent after a January report that a reality TV show depicted the death of a man in a city hospital emergency room without asking the patient's family for permission.
To learn more:
- read the research