LAS VEGAS – While precision medicine has made steady strides over the last few years, there’s still a long way to go before we get to the point of fully realizing its potential. And it’s not just technological challenges causing the roadblocks.

Putting data into action for precision medicine is incredibly important, but there’s also the unwillingness of organizations to share information, Jonathan Hirsch, president of Syapse, said during the HIMSS18 Precision Medicine Forum on Monday.

“One thing we have to do as an industry: We have to get out of this phase that we think precision medicine is so special that we can’t work together,” said Hirsch. “There are competitive interests, but we’re in the space now that we actually have to work together.”

To Hirsch, diagnostic labs and other health tech vendors need to be able to work together and interoperate, as “testing this is not so different than other tests.”

“We need to make knowledge sharing more robust,” said Hirsch.

“It has to be about the data and info being interoperable… but I think we can all agree there are challenges around interoperability,” said Aetna Executive Vice President and Chief Medical Officer Harold Paz, MD.

To Hirsch, it appears the Centers for Medicare and Medicaid Services is moving in that direction, where approval of payment for diagnostic testing is conditioned on an evidence framework contingent on whether you’re sharing that data or whether “you have a registry to track a patient’s outcome.”

Pax said that as technology is constantly evolving in this space, and “without a framework for all the pieces to come together, it’s going to get more and more difficult to accomplish.”

To Quest Senior Vice President Jay Wohlgemuth, MD, this isolated mentality is already being felt with groups developing clinical interpretations that are creating their own definitions of interpretations. Now there are these central databases with varying interpretations, without a centralized standard.

“The core and center should be based on what is clinically valued and supported by evidence,” said Wohlgemuth. “That core has to be in place to be effective.”

Data format is also problematic, Wohlgemuth explained. Genomic information delivered to the patient is often unreadable. And some providers can’t even read the data or understand how to act upon it.

“All healthcare is consumer healthcare,” Wohlgemuth said. “If [the patient] doesn’t engage, or it’s not clear with what to do with that information -- then nothing happens… It becomes a stumbling block for all groups trying to get into this field.”

Twitter: @JessieFDavis
Email the writer: jessica.davis@himssmedia.com