The National Institutes of Health (NIH) has announced awards to add four regional medical center groups to the national network of health-care provider organizations that will implement the Precision Medicine Initiative Cohort Program. Combined, the new health-care provider organizations will receive initial funds of $5.5 million to begin recruitment and build an infrastructure. As efforts advance, the centers may receive first-year funds up to a total of $16 million. The four health-care provider organizations join awardees announced earlier this year, to enroll interested individuals, gather participants’ health information and biospecimens, and provide input on developing plans for the program.
Recipients of the recent NIH awards include four institutions, including the following:
About the Program
The Precision Medicine Initiative Cohort Program is a landmark longitudinal research effort that aims to engage 1 million or more U.S. participants to enable research that will, over time, improve the ability to prevent and treat disease based on individual differences in lifestyle, environment, and genetics. Participants will be invited to contribute a range of data about themselves by completing questionnaires, granting access to their electronic health records, providing blood and urine samples, undergoing a physical evaluation, and sharing real-time information via smartphones or wearable devices. Data collected will be protected by privacy and security safeguards.
A primary goal of the Precision Medicine Initiative Cohort Program is to create a national resource for researchers, including citizen scientists, to help answer important questions about a variety of health conditions. When the program opens for enrollment, people may sign up through a participating health-care provider organization or directly using the program website, smartphone application, or call center.
These additional health-care provider organizations will help us in our efforts to reach communities that have been underrepresented in research. By contributing their information, these communities will help people and their health-care providers identify the right prevention strategies or treatments.— Eric Dishman
“We want this program to be open to everyone across the United States,” said Eric Dishman, Director of the Cohort Program. “These additional health-care provider organizations will help us in our efforts to reach communities that have been underrepresented in research. By contributing their information, these communities will help people and their health-care providers identify the right prevention strategies or treatments. With the Cohort Program, we’re making a concerted effort to include people from all communities and walks of life, to make sure that the knowledge we gain benefits everyone.”
Beyond extending the program’s geographic reach, the new set of awardees have expertise in engaging racial and ethnic minority populations, who have been historically underrepresented in biomedical research. They are also well positioned to enroll over time populations that are often unable to take part in research, such as those with mental illnesses, substance abuse problems, developmental delays, and cognitive impairments.
All of Us Research Program
The Precision Medicine Initiative Cohort Program will be the largest health and medical research program of its kind. To truly reflect the far-reaching nature of the program, the NIH developed a name that would convey the inclusivity and openness that are hallmarks of the Precision Medicine Initiative research program.
To understand the obstacles to and opportunities for engaging potential participants in the Cohort Program, 60 interviews were conducted with potential participants across four locations: Nashville, Pittsburgh, Los Angeles, and Miami. In addition, 60 small group discussions including more than 500 people were held around the country.
These interviews and discussions revealed motivations, frustrations, needs, and goals related to interviewees’ health and their likelihood of participating in the Cohort Program. Their responses influenced the development of the research program, including how it is being designed and will be conducted.
Their responses also made clear that the name of the program needed to better reflect the core values of the program and be trustworthy, transparent, and inclusive. This is how the All of Us research program came to be.
What All of Us Means
With the adoption of the new name, the NIH stated: “All of Us represents the hope for all of us to come together to change the future of health care. The more people across America who participate, the more data they contribute to this research platform, and the more researchers who tap into the data, the greater our chances of unlocking medical breakthroughs. We are calling every person in every community in America to give, for ourselves, for our communities and for our future. We are asking that they join the All of Us research program.”
More information about the NIH’s Cohort Program is available at www.nih.gov/precision-medicine-initiative-cohort-program. ■