This story has been updated to reflect Rosalyn Ryan's connection to Arcondis.
NEW YORK – The Healthcare Information and Management Systems Society (HIMSS), long on the fringes of bioinformatics, is gearing up to create a workgroup on genomics and precision medicine.
HIMSS, which largely represents health IT vendors and IT professionals at healthcare delivery systems, expects to launch the workgroup this summer, according to Tom Leary, senior VP and head of government relations at the Chicago-based organization. Rosalyn Ryan, an Arlington Heights, Illinois-based consultant, will likely chair the workgroup, both she and Leary said.
Leary said the workgroup is interested in "updating the conversation" around the way HIMSS thinks about genomics and precision medicine. "Quite frankly, we've been nibbling around the edges," he said.
This "nibbling" has actually been going on for nearly two decades, ever since HIMSS participated in the American Health Information Community (AHIC), a Bush administration initiative that advised the US Department of Health and Human Services (HHS) on how to build an interoperable system of electronic health records. Leary recalled how then-HHS Secretary Michael Leavitt, a self-described "technology geek," described to him how precision medicine would eventually take hold.
"At that time, he was suggesting that [we should work on] the technical end and start moving towards the policy" to support this future state, Leary said. On the technical side, HIMSS, EHR vendors, and interoperability nonprofit Integrating the Healthcare Enterprise (IHE) USA have since been working to build genomics capabilities into technology, albeit slowly.
The Obama administration accelerated progress on the policy side with the Cancer Moonshot and the Precision Medicine Initiative, steps HIMSS expressed support for. The Cancer Moonshot has been revived under the Biden administration.
While HIMSS has been supportive of those efforts, as well, Leary said that the organization has come to realize in the last year or two that "our positions around precision medicine are vague and perhaps antiquated and don't necessarily align with some of the statements that we've made … around data science and data analytics."
The workgroup, which would fall under the HIMSS Public Policy Committee, is intended to keep the organization current when it comes to genomics data and precision medicine.
"This workgroup would look at our current public policy principles, what is missing, [and] what's outdated [from a] genomics and precision medicine perspective; recommend updates to the Public Policy Committee, and then recommend actions beyond that," Leary explained.
He also said that HIMSS will be looking to incorporate genomics and precision medicine into a report on modernizing US public-health data infrastructure. Meant to be a living document, HIMSS first issued the report in November 2021 and updated it in April 2022.
Ryan is putting together a "coalition of the willing," and has about five or six individual HIMSS members on board with the idea already, according to Leary.
Ryan said that she is convening stakeholders this month both virtually and in person, and will formally present the notion of a workgroup to the HIMSS Public Policy Committee on June 9. Ryan facilitated an interactive workshop on precision medicine and public policy, sponsored by Arcondis, a Swiss life sciences consulting firm that is trying to raise its profile in North America, at last month's annual HIMSS conference in Chicago.
Leary said that the April 18 workshop sparked a lot of conversation among HIMSS attendees who were unable to attend that particular session but who are interested in the topic. The workgroup would allow more people and organizations to weigh in on precision medicine policy.
HIMSS wants to collaborate rather than compete with other health IT industry groups when it comes to influencing policy. Leary said that the organization is already in talks with the Workgroup for Electronic Data Interchange (WEDI), which advocates for standards adoption in health information exchange.
After being asked by GenomeWeb about Leavitt — now a consultant in healthcare reform — Leary said he would also reach out to the former HHS secretary's staff about possible collaboration with the soon-to-be-formed workgroup.