NIH’s All of Us Research Program, National Library of Medicine partner
Monday, December 4, 2017
NIH’s All of Us Research Program and the National Library of Medicine (NLM) have teamed up to raise awareness about the program, a landmark effort to advance precision medicine. Through this collaboration, the National Network of Libraries of Medicine has received a $4.5 million award to support community engagement efforts by public libraries across the United States and to improve participant access.
“We want to reach participants where they are. For many people in the country, including those with limited internet access, one of those places is the local library,” said Eric Dishman, director of the All of Us Research Program. “We’re excited to work with the National Library of Medicine to make more people aware of All of Us and the opportunity to take part.”
This partnership is a three-year pilot program, with several objectives:
- To increase the capacity of public library staff to improve health literacy.
- To equip public libraries with information about the All of Us Research Program to share with their local communities.
- To assess the potential impact of libraries on participant enrollment and retention.
- To highlight public libraries as a technology resource that participants can use to engage with the program, particularly those in underserved communities affected by the digital divide.
- To establish an online platform for education and training about All of Us and precision medicine, with resources for members of the public, health professionals, librarians and researchers.
- To help identify best practices in messaging and outreach that lead to increased public interest and engagement in the program.
“Libraries serve as vital community hubs, and this collaboration presents a perfect opportunity to help the public understand how health research impacts all of us,” said Patricia Flatley Brennan, R.N., Ph.D., director of NLM. “Working with our vast network of public libraries, we hope to contribute to medical breakthroughs that may lead to more tailored disease prevention and treatment solutions for generations to come.”
The All of Us Research Program aims to build one of the largest, most diverse datasets of its kind for health research, with one million or more volunteers nationwide who will sign up to share their information over time. Researchers will be able to access participants’ de-identified information for a variety of studies to learn more about the biological, behavioral and environmental factors that influence health and disease. Their findings may lead to more individualized health care approaches in the future.
Amanda J. Wilson, head of NLM’s National Network Coordinating Office, and Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program, lead the new partnership.
The All of Us Research Program is currently in beta testing.