The President’s Council of Advisors on Science and Technology is expected to join the chorus of organizations calling for changes in federal privacy rules to increase patients’ comfort levels with e-health records.
At a meeting with President Bush April 8, council members told the president that “privacy legislation is imperative to the advancement of personalized medicine,” said Kathleen Behrens, a California venture capitalist and PCAST member who is heading the council committee preparing a report on personalized medicine.
During a council meeting after the meeting with Bush, Behrens said the report will call on Congress to amend the Health Insurance Portability and Accountability Act of 1996 to protect the privacy of genetic information.
Other recommendations likely to end up in the final report, expected around mid-year, are these:
• The Food and Drug Administration should specify how it will regulate clinical decision support systems, which provide doctors with reminders and advice on patients’ treatment. In addition, the report may call for standards for clinical decision support systems.
• The American Health Information Community needs to continue its work on integrating genomic information into e-health records, even after the AHIC ceases to be an official advisory panel at the end of this year.
• The National Institutes of Health, which does considerable genomics research, should consider devoting more resources to translating the research results into knowledge that’s available to doctors in their practices.
• Payers, including the Medicare program, should recognize that genetic tests are different from genetic therapies. Too often, billing and payment systems bundle the two together, but usually the companies providing the services are separate and distinct, Behrens said.
No one at the meeting took issue with Behrens’ lengthy list of recommendations for inclusion in the report, many of them not related to information technology.
However, Dr. John Marburger, director of the White House Office of Science and Technology Policy and PCAST’s chairman, cautioned that too many recommendations on increased oversight of genetic medicine could stifle innovation. “There’s a real danger in over-protecting,” Marburger said.
Personalized medicine involves the use of genetic information about a specific patient to come up with diagnoses and treatments that are suited to that individual. It is expected to become increasingly common.
Among the other organizations that have called for broadening the categories of organizations that are required by HIPAA to keep patients’ information private are the National Committee on Vital and Health Statistics and the AHIC’s Confidentiality, Privacy and Security work group.
Government Health IT presents Rick Friedman, director of the division of state systems for the Center for Medicaid and State Operations with the U.S. Department of Health and Human Services, in this recent eSeminar regarding how the federal Centers of Medicare and Medicaid Services is partnering with state Medicaid and health and human services officials to bring Medicaid into the digital age. Paul McCloskey, Government Health IT editor, moderates.
