We buy eyeglasses that are tailored to our precise vision needs. What if doctors could treat us for cancer or diabetes in the same personalized way—a way designed to fit our genes, environment or lifestyle? This form of disease treatment, diagnosis and management is known as precision medicine, and it holds the promise of dramatically improving population health. Elizabeth Cohn, Ph.D., executive director of Adelphi University’s Center for Health Innovation, is on the front lines of making this promise a reality.
This fall, Dr. Cohn served as the lead organizer and facilitator of the Precision Medicine Initiative Community Partners Workshop, a conference funded by the National Institutes of Health (NIH). The workshop drew together over 100 community and program partners, including the American Heart Association, National Partnership for Women and Families, National Hispanic Medical Association and National Black Nurses Association, in advance of the launch of the All of Us Research Program
All of Us, conceived by President Barack Obama, will be the largest health program on precision medicine. It aims to enroll one million participants who will have their health data and environmental and lifestyle factors tracked and will undergo some forms of genetic testing. Participants will be privy to all of their own information.
The conference “was the first time that community members were brought together with NIH scientists to help design the program as partners and colleagues,” Dr. Cohn said. She emphasized that the NIH is seeking a collaborative partnership with participants.
The conference timing was especially important. “Having the workshop this early in the process allowed for community organizations to have input into how the initiative is being designed and how it will be ultimately implemented,” Dr. Cohn said.
This method of research is known as community-based research. “It is the type of model the Center for Health Innovation is built on,” said Dr. Cohn, who is considered a national expert in this approach.
As the name implies, All of Us is focused on ensuring that people from all backgrounds are well represented. “It’s very much about engaging community and creating citizen scientists who can be active partners in the study,” Dr. Cohn said. To that end, the NIH is partnering with a national network of healthcare provider organizations that will enroll participants and implement the program. The agency will also support community grants to local and national organizations to work on further developing and implementing All of Us.
Dr. Cohn has a long history of fostering community engagement in healthcare outcomes. One of her past projects involved working with religious institutions, such as the Abyssinian Baptist Church in Harlem, that serve minority populations, helping leaders and congregants become more knowledgeable about clinical trial participation. That is why she was a natural choice to facilitate the All of Us workshop She makes a strong case that the “citizen scientists” that this initiative will engage will have the opportunity to be involved in precision medicine research in a way that will benefit individuals and their communities and will advance scientific discovery.