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PMI Will Weave EHR and Patient-Generated Health Data

"Probably by the end of this year, you’ll be able to go to your provider’s portal and actually register yourself to be a donor of data to the Precision Medicine Initiative."

- The Precision Medicine Initiative (PMI), backed by $215 million in allocations from the 2016 federal budget, will combine massive amounts of patient-generated health data and information drawn from electronic health records toward the ultimate goal of creating highly optimized plans of care for patients.

The Precision Medicine Initiative will combine massive amounts of patient-generated health data and information drawn from electronic health records.

But it’s not exactly a new idea.

“If you ask most doctors, they would tell you that they’ve been practicing precision medicine their whole career,” said David McCallie, MD, senior vice president of medical informatics at EHR vendor Cerner, during a recent public Periscope session. “Medicine has always been based on science, and doctors have done their best to be precise in the way they manage their patients.”

What’s changing is the realization that the healthcare industry needs better tools and technologies to manage the immense amount of data that’s collectable from wearable sensors such as activity and heart monitors, and integrate it with the exploding knowledge of the patient’s genome, according to McCallie.

“A lot of people assume [precision medicine] is just about genetics. It’s really about the broad compilation of the environmental, social and lifestyle factors, in addition to the genetic makeup of the patient,” he explained.

All this will come into play by way of the PMI Cohort Program, through which the National Institutes of Health aims to enroll at least one million volunteer participants starting this year and extending through the 2019-20 timeframe. Enrollees will be asked to share data from their EHR and to provide, via survey response, health data on lifestyle habits and environmental exposures. They’ll also undergo a baseline physical exam and provide a blood sample.

“The Precision Medicine Initiative has opened up a new channel for consumers to donate their data. So you don’t have to enroll in a clinical trial under a traditional research grant,” explained McCallie. “Probably by the end of this year, [you’ll be able to] go to your provider’s portal and actually register yourself to be a donor of data to the PMI, and authorize the EHR that’s in place now from the meaningful use program to push that data — a copy of your medical record — into the research cohort. This will really be an interesting innovation. It opens up the door to much more participatory research for consumers, not just sick patients.”

McCallie noted that Cerner plans to participate in pilot projects this spring to test the viability of integrating consumer-donated data. “We’re working to enable our patient portal to expose application programming interfaces [APIs] that will let somebody with a smartphone put in their portal account authorization and then have the data pulled out of the EHR into the smartphone, where it would be donated or pushed into the precision medicine repository,” he said.

The pilots will leverage APIs based on HL7’s Fast Healthcare Interoperability Resource (FHIR) standard to give consumers access to their electronic records through an EHR portal. The APIs will dovetail with “not just the EHR vendors, but people who want to provide services that can plug into EHRs as smart apps, and people who want to take data out of EHRs and facilitate research,” McCallie predicted.

Beyond individual pilots, however, the healthcare industry as a whole will have to become more engaged with precision medicine technologies and programs, according to a survey released by Health Catalyst last month. As reported in HealthITAnalytics, the study found just 33 percent of non-academic healthcare organizations anticipating that precision medicine would play a significant role in their activities over the next five years (compared to 71 percent at academic medical centers). Additionally, in terms of readiness to incorporate precision medicine into care delivery strategies, academic centers are outpacing other providers by about a 2-to-1 margin.

McCallie acknowledged that progress won’t happen overnight, especially on the consumer front. Privacy issues — assuring consumers that they will be protected from any harm that may come from having donated their data — will be a primary concern. PMI-participating consumers will also need to understand that the research may expose them individually to previously unknown — and potentially life-changing — health discoveries.

Nonetheless, he anticipates that most consumers “will be perfectly comfortable with those concerns.”

He remains excited about the prospect of “[optimizing] a patient’s care and individualizing it in ways that just weren’t possible before the modern explosion of knowledge of the patient’s genome, knowledge of their exposure history, and the immense amount of data that we can collect from devices that they carry on their body.”

“We’ll get there,” McCallie concluded. “It’s not going to go backwards.”

Image credit: National Cancer Institute



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