As the National Institutes of Health looks to recruit a million or more participants for the Precision Medicine Initiative’s All of Us research program, getting volunteers to contribute their electronic health records is one of the biggest challenges confronting the national cohort.
That’s according to Stephanie Devaney, the program’s deputy director, who testified on Wednesday before a House health subcommittee.
“One of the data types that’s going to be one of the most essential to precision medicine is going to be information from electronic health records,” said Devaney. “This is one of the largest challenges for our program.”
According to Devaney, a nationwide network of 10 large healthcare provider organizations (HPOs) is helping to enroll participants in NIH’s All of Us research program, as well as to gather their medical records, health data, and biospecimens. The agency is looking to leverage EHRs at HPOs including regional and national medical centers, community health centers and those operated by the Department of Veterans Affairs.
“We’re getting those data continuously from those partnerships but we’re also working on other strategies, including one in partnership with four of the largest EHR vendors right now to work on making the data transmission much more seamless across provider lines,” she added.
Francis Collins, MD, director of NIH, told lawmakers that since the national launch of the All of Us program on May 6 more than 86,000 volunteers “have signed up to contribute their health data in many ways over many years.” Collins noted that almost 50 percent of those participants are from racial and ethnic groups who have not historically been included in biomedical research.
“Next year, we will begin enrolling children—we decided to first start with adults, but next year children will be added in,” said Collins. “And, in 2019, we plan to open a secure portal to give researchers access to All of Us data in a de-identified format with exceptional security. With every new person enrolled, every biological sample preserved, every electronic health record collected, every survey filled out, this data will hold more and more promise for advancing human health.”
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