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In Nod to PGx, HHS Creates Cross-Agency Team to Integrate Genomic Data and Electronic Med Records

The US Department of Health and Human Services has kicked off a multi-agency effort to integrate genetic and genomic data with clinical information systems and electronic health records.
The initiative is noteworthy for pharmacogenomics because it signals a desire among top US healthcare officials to enable medical providers to “consider genomic information” when considering their prescription choices.
“Ultimately, personalized medicine will mean using our genomic information in a way that will enable us to deliver healthcare that’s unique to each one of us,” said Health and Human Services Secretary Michael Leavitt, who announced the initiative on Sept. 12. “It will enable our healthcare system to be based on the treatment of individuals, rather than averages.”
Leavitt unveiled the initiative at a meeting of the American Health Information Community, a public-private collaboration HHS created last year to guide the development and adoption of electronic health records as part of the national health information technology initiative.
He said he has put together a “team that is working across HHS” — including the Food and Drug Administration, the National Cancer Institute, the Centers for Disease Control and Prevention, and the Centers for Medicare and Medicaid Services — that is “highly focused” on integrating genomic data with medical records.
Greg Downing, director of the Office of Technology and Industrial Relations at NIH, is coordinating the effort.
Personalized medicine “is a lot closer than you think,” Leavitt said, citing the falling costs of genome sequencing and other genomic technologies. However, he noted, converting genetic discoveries into better healthcare on a large scale “requires systems that can manage large volumes of information about individual patients.”
Furthermore, he noted, “this information will have to be managed in a standardized way to be used effectively.” Leavitt described the cross-HHS initiative as “an opportunity to think through ways to handle that information now before we’re mired in hundreds or thousands of competing standards for it.”
The initiative is a “green field,” he said. “This is a place where we could start now and incorporate the capacity to store genomic profiles as a part of our electronic health record.”
In a brief presentation outlining personalized healthcare “considerations” for the AHIC, NIH’s Downing said that the Human Genome Project has been an important factor in the drive toward personalized medicine, “but an important enabling component to patient-centric care is health IT, and much that has been going on in the [AHIC] in the last year is really setting the pipeline, if you will, for the integration of health IT and genetic information that we believe will be transformative.”

“Healthcare providers need to be able to consider genomic information in conjunction with the pharmacology of medicines that they prescribe.”

Neither Leavitt nor Downing offered much detail about what the HHS envisions for the initiative, and HHS officials declined to provide further comment, citing the early state of the effort.
It is still unclear what role AHIC may play in the initiative. In response to a question following Downing’s presentation, David Brailer, National Coordinator for Health Information Technology at HHS, said that “we are currently considering how to organize the [AHIC’s] part in that. Whether it’s an independent workgroup or part of another [workgroup] is undecided.”
Leavitt added that “there will be a workgroup, but its relationship with AHIC is the question.” 
Further details of the effort will be discussed at the next AHIC meeting, scheduled for Oct. 31 in Washington, DC.

A complete version of this article originally appeared in the current BioInform, a Pharmacogenomics Reporter sister publication.

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