Podcast transcript: All of Us: Better health through inclusive research
Interview with the All of Us Research Program's Dara Richardson-Heron
Interview conducted by Mark Barna, assistant editor of The Nation’s Health newspaper.
Listen to this interview as a recording on our podcast page.
This is The Nation’s Health podcast. On this episode, The Nation’s Health speaks with Dr. Dara Richardson-Heron, chief engagement officer for the All of Us Research Program. The program was launched in May 2018 by the National Institutes of Health. It hopes to have one million people in the U.S. take part.
By the one year anniversary, over 142,000 people had completed all of the initial steps to join the long-term study. All of those participants provided medical information to ultimately improve health outcomes, and ways of preventing and treating chronic illnesses and diseases. An important component is reaching out to people who have been typically underrepresented in large medical research studies. That includes people of color, but also seniors and women.
As part of her job, Richardson-Heron oversees program partners across America who hold information events to raise awareness about the importance of underrepresented groups taking part in All of Us. I spoke with Richardson-Heron in mid-May.
What is the goal of the All of Us Research Program?
The goal of the All of Us Research Program is to accelerate health research and medical breakthroughs enabling individualized prevention, treatment and care for all of us. That's actually our mission as well. And what’s really exciting is that the data won’t focus on one specific demographic or condition, but it will cover a broad range of conditions and data types. We really want to create a database to serve as a resource to researchers who are studying all kinds of healthcare questions. And really, one of our top priorities is to achieve demographically, geographically and medically diverse participant community by intentionally including those individuals who have historically been underrepresented in biomedical research. That's really a major aim of our program.
And what would you say is different about the All of Us program when compared to other long-term health science studies?
Oh my goodness. Our program is different in so many ways. You know, I often describe our program as unique and transformational. First, the breadth of our program is enormous. We have a goal of enrolling 1 million or more participants across America. And again, as I said, we are building one of the world's largest and most diverse health databases. As the volume of data grows, patterns may emerge that wouldn't be visible at a smaller scale. That's one way that we're different. Another way that we're different is our diversity of scale. Our 1 million or more participants will reflect the rich diversity of America and include our participant partners, since that’s what we call our participants, of many races and ethnicities, ages, geographic regions, gender identities, sexual orientations, economic and educational and health statuses — and many of these individuals have not previously taken part in research.
Why is it important to have representation of all ages, genders, races, ethnicities and locations in the program?
Well, you know, I think we all know that today minorities make up approximately 38 percent of the United States population, and by 2060 minority populations are projected to rise to more than 56% of the overall population. And to date, research participants really have not reflected the rich diversity of our nation. In fact, less than 10% of clinical trial participants come from minority backgrounds. And there are many other underrepresented groups. Sexual and gender minorities, those who live in rural areas, individuals with disabilities, low income and education — they really are not included in research. And as a result, many research databases and clinical trial participants do not reflect the rich diversity of our nation. We are already a game changer in this regard. But what's really critical is that this lack of inclusion and diversity trickling into the development of treatment and prevention strategies may not take into consideration important aspects of race, ethnicity, gender, lifestyle, biology and environment.
And can you offer an example of how All of Us might help with prevention of a chronic illness, or illnesses?
Yes, you know, so — you know, here's the reality. We all know a lot about health disparities. We know that they exist. But we don't fully understand them. So a program as diverse as the All of Us Research Program will provide us with the data that truly reflects the rich diversity of the United States. And so with that information, we can start looking much more closely at illnesses that are currently not well understood, or not effectively being treated in some communities. And so our diverse cohort will enable researchers to identify previously unknown information and trends that might answer questions, such as why do African Americans have a higher mortality rate from chronic diseases such as heart disease, diabetes and hypertension? Why is Hepatitis B more common in Asian and Pacific Islander populations?
What do you envision in five years that the All of Us Program will look like?
I envision that in five years — in terms of our program — hopefully we will have reached our 1 million or more participants. We will have a very robust system where participants are actively involved and engaged in research. Researchers will have had access to our database and they will have begun to identify some trends and new information at a scale that would not have been previously available, given the diversity of our program. And hopefully they will have begun to identify some advances that will benefit the health and health prevention of many in our communities and gained a better understanding of the impacts of lifestyle, environment and biology on all of our health, and how those come together.