Sharing health information to inform precision medicine initiatives is taking data sharing to a whole new level—and crossing international datelines.
Spurred on by value-based care payment models and the need to manage populations of patients, payers and providers have become more adept at sharing data within their own systems and with other organizations in their region.
The U.S. government has pushed to improve interoperability and allow for wider dissemination of genomic and other data through programs such as the Precision Medicine Initiative and Sync for Science for good reason: Developing optimal medical treatments and drugs holds great promise for improving population health.
But precision medicine is a data-hungry discipline. And managing all that data—getting accurate and actionable information to the right place at the right time and using it in an appropriate way—is a heavy lift. “That’s where the bulk of the effort is going to be on the clinical side,” says Brad Ptasienski, a director in consulting firm West Monroe Partners’ technology practice. “There’s going to be big data management and master data issue that arises from all this data [and] getting the data in the right place at the right time will be a challenge.”
Creating a data fabric
Researchers need as much standardized data and as many sample data sets as possible to discover what’s possible, he adds. “What kind of insights can they drive? What sets of variables seem to correlate? They’re going to be the ones that are trying to figure out just how valuable this information is.” And on the clinical side, applying data-driven “eureka moments” from the research side and applying it in clinical medicine “is going to be the crux of the work effort.”
And data privacy, of course, cuts across everything. Genomic data is “the ultimate PHI … it’s everything about you,” Ptasienski says.
“There’s a data fabric that has to get created in the ecosystem,” says Munzoor Shaikh, a director in the healthcare and life sciences practice at West Monroe. “So imagine all these disparate EMRs and systems and labs: That’s what exists today. There’s no common place for them to talk.”
A national database might not be the solution, he says, especially as data-sharing spreads across the globe. Rather, he envisions domain-specific data hubs, including one focused on precision medicine. “It’s a bit like blockchain in the sense that not one person owns it,” he says. “It’s owned, essentially, by the overall ecosystem.”
Building an ARC
A network of academic medical centers in Israel, the US, Canada and Europe have created just such a hub. The ARC Innovation Center was founded at Israel’s largest hospital, Sheba Medical Center in Ramat Gan—participants include Intermountain Healthcare in Utah, Stanford Healthcare in California and Ottawa Hospital in Canada.
ARC, which stands for accelerate, redesign and collaborate and includes both a virtual and physical workspace, focuses on using AI, big data and genomics to drive precision medicine initiatives. The goal is to “change healthcare completely within 10 years,” says Eyal Zimlichman, MD, Sheba’s chief innovation officer.