Unified electronic health records could go a long way toward unlocking the potential of precision medicine if a California advisory committee's recommendations play out.
After a year of study commissioned by former Gov. Jerry Brown's office, the Precision Medicine Advisory Committee recommended that the state set up a working group to examine the feasibility of such a system.
"Much better integration of various data sources is possible (including the social, economic, and environmental data) and beneficial, and can be activated through state leadership," the committee wrote.
A unified patient record system would be a dramatic leap forward for interoperability. Thus far, EHRs have been siloed by different private companies, and most of them aren't compatible with each other. The "California Patient Record" envisions a universally compatible health record in the state—one that patients can update as well as providers.
This could take the form of creating an entirely new EHR, but members of the committee thought that was unlikely. Instead, they anticipated a robust sharing of application programming interfaces to make EHRs truly interoperable—and added functionality to give patients access.
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"What I think we're talking about is creating a way that patients can have some unified place to go regardless of who their healthcare provider is, so if you think of it as something that sits on top of or connects existing systems, that's most likely," said Kim Goodwin, a member of the committee and senior adviser at personalized health network PatientsLikeMe, in an interview with FierceHealthcare.
"This could be built as a patient web portal that feeds data back to EHRs, or it could be done—you know, we set some standards and the different EHR vendors build this into their PHR patient portal, for example," Goodwin said. "So there's a couple ways it could happen."
Either way, this is a big deviation from the status quo, in which EHRs are usually restricted to the hospital or health system for which they are contracted—and patients can be barred from their data entirely.
"From a patient's point of view, it's hard for medicine to be precise when providers have a pretty incomplete idea of the whole picture of your health. For example, lots of people will see a psychiatrist who's maybe not in the same network as their primary care physician, they don't all talk to the same EHR. So, the psychiatrist prescribes a drug, you know, the emergency room physician doesn't have that," Goodwin said.
The committee's recommendation is a solution for health records, but the ultimate goal is to create an environment to enhance precision medicine efforts. After all, precise insights into a patient's unique health situation would be more valuable if they can be easily shared among new providers or researchers as the need arises.
"We believe that in order to understand precision medicine's impacts, we must begin with a pilot that integrates that various components needed for precision medicine (e.g., technology tools, data integration and sharing, research and clinical partnership, patient-centered care) within a defined population," the committee wrote in its action plan (PDF).
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The recommendation to study a unified health record came alongside recommendations for further investment and study in precision medicine. The committee noted that while the state has already invested $53 million in precision medicine, more investment in specific and broad disease areas would be necessary for California to "maintain its leadership role."
The committee did warn that between these investments and the costs of precision medicine tests themselves, healthcare spending would increase significantly in the short term. However, the committee spent a lot of time on equity questions in the report, making sure that future precision medicine opportunities will be evenly accessible.
"One of the things that I personally was really impressed with was the focus on equity and ensuring that precision medicine didn't just become something for the 1%," said Clara Lajonchere, Ph.D., deputy director for the UCLA Institute for Precision Health, in an interview with FierceHealthcare. "And that really echoed—it was one of our guiding principles, and it really echoed and was a theme that was woven across all of the different work groups." During the process, Lajonchere worked closely with Kelsey Martin, M.D., Ph.D., another member of the committee.