President George W. Bush’s Council of Advisors on Science and Technology is expected to join many other organizations calling for changes in federal privacy rules to increase patients’ comfort levels with EHRs, according to Government Health IT.
At a meeting with the President on April 8, council members told him that “privacy legislation is imperative to the advancement of personalized medicine,” said Kathleen Behrens, a California venture capitalist and President Council of Advisors on Science and Technology (PCAST) member, who is heading the council committee preparing a report on personalized medicine.
After the meeting with Bush, Behrens said the PCAST report will call on Congress to amend HIPAA to protect the privacy of genetic information, according to Government Health IT.
Additional recommendations likely to end up in the final report, which is expected to be released around mid-year, include:
- The FDA 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 (AHIC) needs to continue its work on integrating genomic information into EHRs, even after the AHIC ceases to be an official advisory panel at the end of this year.
- The National Institutes of Health, which conducts genomics research, should consider devoting more resources to translating the research results into knowledge that’s available to doctors in their practices.
- Payors, including Medicare, should recognize that genetic tests are different from genetic therapies. Too often, billing and payment systems bundle the two together, Behrens said.
No one at the meeting contested with Behrens’ list of recommendations for inclusion in the PCAST report, even though many of them were not related to IT, according to Government Health IT.