Initiative behind cancer moonshot, genome mapping gets 'soft launch' in March

In a HIMSS conference where much of the policy decisions have been to-be-determined, acting ONC chief Dr. Jon White shed some light on the next steps for health IT and the Precision Medicine Initiative on Feb. 21.

Speaking at a panel session with Centers for Medicare and Medicaid Studies Chief Medical Officer Kate Goodrich, White said that pilots for the genetic profiling project will start next month, leveraging the power of data based in health IT with a soft roll out.

"How health IT helps here is people get their care information on a digital-structured format in a certified technology that's got specified ways for getting data into and out of the system," he said.

The PMI project looks to utilize the health information of at least 1 million Americans to provide data-based research for a number of potential health treatments, including genomic mapping and the cancer moonshot.

Congress appropriated $205 million in research funding in 2016, and ONC interoperability efforts will help fuel the secure sharing of health data.

"So we’ve got a really rich source of people’s health care data in certified technology," he said.

"So when people agree to participate in this research initiative, there’s one of two ways they can come in right now: Either through health care provider organizations that have received cooperative agreements from the National Institutes of Health or there’s going to be an open door for people who are not going to be a part of these organizations."

White added that having health IT certified by ONC means the information collected will be able to be disseminated and researched through proven compatible formats to see the full picture of the health data.

"We are going to use these [Fast Healthcare Interoperability Resources]-based [application program interfaces] to both recognize that it’s the right person, get their appropriate consent to have their information shared with the research cohort and then deliver the information from certified technology."

White said that ONC has been working in partnership with industry to develop APIs that will promote the free flow of health information to help populate the PMI pilots.

The agency’s role is central to the PMI because it will ensure that the data can be shared securely so the initiative can disseminate across the research cohort.

"ONC’s role in this is pretty specific," White said. "We are working to promote and develop data standards that can be used for the Precision Medicine Initiative. We are working to pilot those standards so the technology can move the initiative forward and finally robustly partner with the Office of Civil Rights to address privacy and security policy around people’s data."

ONC received $5 million of the 2016 PMI funding for the coordination of data standards for the project.

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