Privacy of health data sharing worries consumers

Although most adults are confident in the privacy and security of their medical records, many express concerns about sharing of information between providers, according to research from the Office of the National Coordinator for Health IT.

The work was based on a 2011-2012 nationally representative survey of 3,924 adults conducted by the National Cancer Institute (NCI) and published at the Journal of Medical Internet Research Medical Informatics.

Overall, three-quarters of adults reported they were very or somewhat confident in the security and privacy of their medical records; this was unrelated to whether their providers used an electronic health record system.

However, a majority (59.06 percent) of adults expressed concerns about the sharing of information between healthcare providers, whether electronically or by fax. And 12 percent said they had withheld information from a healthcare provider due to privacy or security concerns.

The research echoes findings from a poll of Californians that found that consumers' concerns must be addressed to make health information exchanges (HIEs) and distributed research networks work.

Among ONC's other findings:

  • More than twice as many adults receiving high quality of care reported being very confident in the privacy and security of their medical information as compared to those who received fair or poor quality of care
  • Adults who reported a greater confidence in their ability to find and control the information they need for their own health also reported a greater sense of confidence in the privacy and security of their medical records and less concern about data transmitted between providers

"Given that positive healthcare experiences and higher information efficacy were associated with more favorable perceptions of privacy and security, efforts should continue to encourage providers to secure medical records, provide patients with a 'meaningful choice' in how their data are shared, and enable individuals to access information they need to manage their care," the authors said.

A report based on "listening sessions" with the public by the Robert Wood Johnson Foundation also found similar concerns. That report cites the need to strike a balance between privacy and the free flow of information

To learn more:
- read the research