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HHS to Create Personalized Healthcare Workgroup Under AHIC, Plans to Issue RFI

WASHINGTON (GenomeWeb News) – As part of an emerging effort to include genetic testing and genomic data within its broader health IT initiative, the Department of Health and Human Services is taking several steps to better understand the information technology requirements for personalized medicine.
During a meeting of the American Health Information Community here today, Michael Leavitt, HHS secretary and AHIC chair, said that AHIC would create a new workgroup to focus on IT issues related to personalized healthcare, including genetic testing and genomic data standards.  
The 18 members of AHIC, a public-private advisory committee formed in late 2005 to advance the development of electronic health records, agreed today to create the new workgroup. Leavitt said that details of the group’s activities will be discussed at the next AHIC meeting, scheduled for Dec. 12. The committee currently includes seven workgroups.  
While the personalized healthcare workgroup’s goals have yet to be determined, David Brailer, former national coordinator for health information technology and AHIC vice-chair, presented five broad points that it would likely address. The group will first survey existing standards efforts for genetic and genomic testing in order to get a better understanding of ongoing initiatives in the field. Second, the group will determine the “proper role” for current AHIC working groups and other ongoing health IT initiatives in advancing personalized healthcare. Next, Brailer said, the workgroup would determine a plan for how genetic information standards will be deployed over the next two years. The next initiative would involve an evaluation of the privacy and security issues related to genetic data. Finally, the group would propose two use cases in an area of clear clinical utility that would help “move the agenda forward.”
In addition, the HHS also plans to issue a request for information titled, “Improving Health and Accelerating Personalized Health Care Through Health Information Technology and Genomic Information in Population- and Community-based Health Care Delivery Systems.”
The RFI seeks input from organizations that have “interests in health systems change and personalized health care,” according to a copy obtained by GenomeWeb News, including healthcare providers, academic research centers, industry, advocacy groups, and consumers.
“The ability to integrate new scientific knowledge, especially our growing understanding of the human genome, into the health care setting in an efficient and timely fashion will rely on robust, reliable, and secure information sources in electronically interoperable systems,” according to the RFI. “This request seeks information that will facilitate a broader understanding of directions being taken and the productive role that Federal health agencies might play in facilitating progress, avoiding unnecessary barriers, and achieving optimal benefit from the opportunities now before us.”
Specific areas for comment include the “anticipated applications of genomic-based clinical testing in medical decision-making, safety assessment, and risk assessment,” as well as the challenges associated with including genomic information as part of longitudinal data collection, and the need for standards or best practices “that will facilitate large-scale data integration and exchange to benefit personalized health care.”
The RFI will be posted on the HHS website by the end of the week. Responses are due Jan. 2, 2007.

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