Eric Dishman, director of the All of Us Research Program, emphasized individuals must share their EHR information to reap the program's full benefits in an Oct. 26 YouTube video.
The All of Us Research Program, which is part of the National Institutes of Health's precision medicine initiative, aims to engage more than 1 million participants to share biological samples, genetic data and lifestyle information. The program — which will serve as a national research resource to inform future precision medicine studies — launched its beta stage in June.
"It's important to understand for all participants or future participants out there that getting your holistic longitudinal health record is just a fundamental pillar of the program," Mr. Dishman said in the video, titled "The Dish: Sharing Your Electronic Health Record."
To date, 4,000-plus people have completed the enrollment protocol for the program, and more than 6,000 are in the midst of enrollment.
However, some have balked at the idea of sharing their EHR with the research program. Two percent of interested individuals have declined full participation in the program because they don't want to share their EHR, according to Mr. Dishman.
"If you're nervous about it, it's good, because you should pay attention to something that has such precious and personal data," Mr. Dishman said in the video. He added the All of Us Research Program applies a range of cybersecurity precautions, such as de-identifying and encrypting patient data.
"You're coming on a long journey with us," he continued. "You may not even have your EHR yet, but if you consent we're going to be making some investments to help you as an individual get access to an increasingly richer and deeper record about yourself, and then de-identify that to share with the researchers."
To access the full video, click here.