Although federal law prohibits employers from using healthcare information to limit job opportunities, 52% of the public is concerned that companies will do this and one out every eight adults in the U.S. has practiced some type of "privacy-protective behavior" such as seeing a different doctor for a potentially embarrassing condition or paying for a test or procedure in cash to avoid filing a claim, according to a telephone survey of 2,100 adults by the California HealthCare Foundation.
A similar survey in 1999 found that 36% of respondents said they were concerned employers would misuse medical information. Part of the reason for the increase in concern is that HIPAA privacy notifications are not understandable, according to the foundation's Chief Program Officer Sam Karp. Answers in the most recent survey, conducted this summer, have a margin of error of plus or minus three percentage points.
Karp said at a news briefing that the purpose of the survey was to better understand consumer attitudes and to direct the health information technology agenda. The leader of that agenda, National Coordinator for Health Information Technology David Brailer, M.D., spoke at the briefing and noted that despite existing privacy concerns, the survey showed 98% of the public is willing to share information in their personal health record with a physician they see regularly.
"People want to make the information available to their doctors," Brailer said. "They want this because they believe it will improve their care."
Former HHS Secretary Louis Sullivan, M.D., said that privacy concerns must be worked on with the same vigor as the interoperability issues that Brailer's office is seeking to address. Sullivan added that, rather than developing new laws, existing regulations need to be enforced and medical, community and business leaders must join government entities in aggressively educating the public about the right to medical privacy guaranteed by the Health Insurance Portability and Accountability Act, or HIPAA.
Based on its survey findings, the Oakland-based philanthropy -- which works on improving healthcare delivery and financing -- recommended that HHS execute a HIPAA public-awareness campaign and that employers put in place stringent safeguards to protect their workers' healthcare information and then tell their employees about the safeguards. It also urged the federal government to more vigorously enforce existing laws.
Karp noted that there has not been one civil prosecution resulting from the 15,000 HIPAA-related complaints that have been filed with HHS and compared enforcing HIPAA laws to traffic control, saying that drivers slow down when they see someone pulled over for speeding.
Read the executive summary.