Two surveys presented to an Institute of Medicine committee show that most U.S. residents do not believe that HIPAA medical privacy rules sufficiently protect their personal health data and that researchers overwhelmingly report that HIPAA has made their work more difficult, Government Health IT reports.
The committee, which is tasked with assessing how the HIPAA privacy rule affects health research, commissioned a nationwide Harris Interactive survey of 2,392 U.S. adults. The survey found that nearly three out of five respondents said that the privacy of their health data is not well protected by federal and state laws, and organizational practices.
Privacy consultant Alan Westin told the IOM committee that the main reason U.S. residents do not participate in clinical trials and health research is because of fear that their personal health information will be disclosed. Thirty-eight percent of survey respondents said they would allow their personal health information to be used in a research project if they knew more about the project and could give specific consent for each project.
A separate survey presented to the committee of 1,527 epidemiology researchers indicated that HIPAA and other privacy rules have made research more difficult by slowing down projects and making medical research more expensive.
Roberta Ness, an epidemiologist at the University of Pittsburgh, noted that because HIPAA has made it more complicated for patients to consent to participate in research, with longer and more detailed forms to review, participants' data might actually be less protected because it is too complex. She added that fewer physicians are reporting communicable diseases to state officials because of privacy concerns (Ferris, Government Health IT, 10/2).