Nearly three of five Americans agree that the privacy of their health information is not well protected by federal and state laws and organizational practices, according to a survey by Harris Interactive released today.
The nationwide survey of 2,392 adults was commissioned for an Institute of Medicine committee that is considering how the Privacy Rule promulgated under the Health Insurance Portability and Accountability Act of 1996 affects health research.
Alan Westin, a privacy consultant, told the committee that fear of disclosure of their personal health information is the primary reason Americans decline to take part in clinical trials of new medicines and other health research.
When asked under what circumstances they would agree to allow their personal health information be used in a research project, the largest group, 38 percent, said they wanted to know more about the project and would have to give their specific consent for each project. “They’re looking to see whether they trust the researchers,” Westin said.
At the same time, other surveys presented to the committee suggested that HIPAA and other privacy rules are slowing down research, adding to its cost, and in some cases, stymieing the projects.
For example, Roberta Ness, an epidemiologist with the University of Pittsburgh, said her survey of 1,527 epidemiology researchers found overwhelmingly that HIPAA has made research more difficult.
HIPAA-related difficulties have not lessened and may have increased over the years since the HIPAA Privacy Rule took effect in 2003, Ness and other investigators told the committee.
Ness suggested that because HIPAA has made giving consent to research more complicated, with longer and more dense forms for patients to review, human research subjects’ information may be less protected.
“There’s a sense of erosion of the whole consent process” because it’s too complex, she said.
Ness also said it appears that fewer doctors are reporting communicable diseases to state authorities because of privacy concerns.
With patients mistrusting privacy protections and researchers encumbered by them, she said, “I think it’s clear that on both sides, we haven’t gained very much.”
The committee is expected to produce a report next year.
From the battlefield to the home front: Managing medical data
Government Health IT presents Col. Claude Hines Jr., program manager for the Defense Health Information Management System, in this recent InSight eSeminar. Col. Hines discusses the health information technology and tactical challenges faced by the military medical community in Iraq, Afghanistan and other areas of conflict. In doing so, he describes the current information technology solutions for transferring clinical data between battlefield care givers to health care personnel at military treatment facilities worldwide.
