Access to EHR data will be a critical part of the National Institute of Health’s precision medicine research efforts, but even the director of the agency’s large-scale research initiative is sympathetic to the skepticism of prospective participants.
Eric Dishman, director of the All of Us campaign that plans to collect information from 1 million people, said access to a “holistic, longitudinal health records is just a fundamental pillar of the program,” in a video addressing concerns participants might have about turning their medical information over to government researchers.
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Dishman said 4,000 people have already gone through the onerous consent process and more than 6,000 are still moving through that process. While 2% have declined to participate because they don’t want to turn over their EHR, Dishman said it’s difficult to quantify the number of people who are preemptively put off by the idea.
“If you’re nervous about it, it’s good,” Dishman said. “Because you should pay attention to something that has such precious and personal data and know what’s going to happen with it.”
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Part of the program will also include NIH funding devoted to helping individuals that don’t have complete EHR “get access to an increasingly richer and deeper record,” which can be de-identified and use by researchers to develop new targeted cures.
“In some cases, it may take a year or more for us to figure out the strategy to do that, but it’s a fundamental commitment to the program, a value proposition of the program and necessity for changing the game of precision medicine research,” he said.