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James Boyd
CLEAR Health Information

Last modified: Tuesday, February 15, 2011

CLEAR Health Information offers recommendations, assistance in response to PCAST report

Feb. 15, 2011

BLOOMINGTON, Ind. -- The release of the President's Council of Advisors on Science and Technology (PCAST) report on health information technology is just the latest in a series of calls for sweeping changes to the nation's most extensive federal health privacy law, according to two directors of Indiana University's Center for Law, Ethics and Applied Research in Health Information.

Distinguished Professor Fred H. Cate and former Eli Lilly Chief Privacy Officer Stanley W. Crosley, co-directors of CLEAR Health Information, have offered the center's research and expertise to help implement recommendations made in the report.

Issued late last year, the PCAST report -- drafted by health care professionals, IT experts and privacy groups -- provides detailed suggestions that would allow more efficient use of information technology to improve health care quality and reduce health care costs.

But to do so, Cate and Crosley recommend changes to key legislation at the core of health privacy -- the Health Insurance Portability and Accountability Act (HIPAA). While acknowledging the broad positive effects of HIPAA in protecting health privacy, Cate and Crosley -- echoing the sentiments of the PCAST report -- note that HIPAA significantly impedes important health research.

"The PCAST report is the most recent in a series of reports recommending that HIPAA be revised to facilitate both the use of personal information in health research and better privacy protection when doing so," Cate and Crosley said in a letter to David Blumenthal, national coordinator for health information technology at the Department of Health and Human Services. "No technological innovations in the world will allow this country to achieve the full benefit of health information technologies if bad policies impede research, raise costs and undermine trust."

Cate and Crosley said HIPAA imposes significant costs on America's health care system, not only in financial terms but also in terms of health care quality and innovation.

"Personal information is essential to all medical research," the directors wrote. "A growing body of research relies on personal health information so heavily that no actual additional medical intervention with a human subject is necessary. As more data about health come available in digital, structured form, retrospective and other noninterventional studies are playing an increasingly important role."

HIPAA's current restrictions are detrimental to both patient privacy and life-saving medical research, the authors noted. Cate and Crosley support previous recommendations from the Institute of Medicine, which call for the reformulation of HIPAA provisions to ensure both patient privacy and patient benefits from medical research.

While the PCAST report suggests amending HIPAA to permit greater access to personal health information and implementing data-tagging to allow more individual choice in how personal data is accessed, Cate and Crosley note that such granular preference-setting could be unworkable.

"In the face of the extraordinary proliferation of health-related information, we believe it is unrealistic to expect that individuals, who already overwhelmingly ignore privacy notices and choice opportunities, are going to have the time, expertise or interest to express even more detailed preferences," the directors wrote, adding that personal consent could lead to biased datasets in research.

Cate and Crosley offered the research and services of CLEAR Health Information as the Department of Health and Human Services begins considering the PCAST recommendations. The center is currently conducting a National Institutes of Health-funded project titled "Protecting Privacy in Health Research," and has offered to share its ongoing results. That project is building on IOM recommendations and developing specific proposals that would carry out the regulatory change recommended by the PCAST report.

Established in the fall of 2010 through a generous grant from Lilly Endowment Inc., CLEAR Health Information addresses ethical, legal, and social issues involved in the growing use of health information to facilitate treatment and research, improve health outcomes for patients and heighten accountability.