On Wednesday, May 23, Chief Engagement Officer of the National Institutes of Health’s All of Us Research Program, Dr. Dara Richardson-Heron shared an overview of the program with attendees of MLA '18’s Plenary 4 session.
The All of Us Research Program (AoU) is seeking to recruit at least one million volunteers to share their health information with the National Institute of Health (NIH). The goal of AoU is to advance the Precision Medicine Initiative, which NIH defines as health care that is based on each individual and focuses on the prevention and treatment of diseases that account for differences in factors like lifestyle, biology, and family history. Dr. Richardson-Heron described precision medicine as delivering the “right treatment for the right person at the right time” and shared examples of precision medicine at work, such as eyeglass prescriptions, insulin pumps, blood transfusions, and hearing aids.
Why is All of Us being conducted now? Dr. Richardson-Heron said that the time for this type of large-scale research endeavor is right because advanced technology allows for the collection of huge amounts of data, more people are engaged with their health, and researchers have a greater understanding of human genes.
AoU is seeking to recruit a diverse pool of participants from all populations, and the program is open to those that are both healthy and sickly. AoU promises to ensure participant privacy and to provide participants with a chance to learn more about their own health. Dr. Richardson-Heron stated that researchers and providers will be able to request access to AoU data to research methods of providing more “precise, impactful, effective care.”
Dr. Richardson-Heron also outlined AoU’s partnership with the National Networks of Libraries of Medicine (NNLM). She emphasized that libraries are not being asked to recruit participants, but that they are welcome to provide education and awareness about the program. AoU plans to highlight libraries as resources for participants that need access to technology. Libraries will be able to take advantage of AoU’s traveling exhibit kits, and libraries can also partner with NNLM to design regionally relevant AoU engagement activities for their communities.
Dr. Richardson-Heron invited libraries that are interested in getting involved AoU to contact Amanda Wilson (Head, National Network Coordinating Office, Library Operations, National Library of Medicine) at email@example.com. Individuals that are interested in learning more can visit the AoU website for more information.