All of Us Research Program aims to enroll 1 million participants

By: National Rural Health Association | 9/21/18

Dara Richardson-Heron

The National Institutes of Health’s All of Us Research Program is a long-term initiative that aims to enroll one million or more participants who will share information about their family health histories, lifestyles, and personal medical histories. The goal is to help improve researchers’ baseline understanding of what it means to be healthy and sick, ultimately to develop more precise and effective methods to keep people healthy and treat those who get sick. The program officially launched on May 6 with a series of events around the country.

Dara Richardson-Heron, MD, All of Us chief engagement officer and scientific executive, has been involved since the beginning as an inaugural member of the All of Us Research Program Advisory Panel. Her primary objective is to forge partnerships with research participants, health care professionals, and national and community-based organizations to raise awareness of the program and engage members, with a special focus on populations that have been historically underrepresented in research.

Dr. Richardson-Heron sheds light on goals and next steps for All of Us in a Q&A with the National Rural Health Association.

Q: Why did you get involved with this project?

A: As a physician, I’ve seen the health care system from many angles. The need for more precise medical treatment for my patients was abundantly clear. More personally, as a breast cancer survivor, I felt that need very intimately. That’s why I am extremely excited about the promise of more specific and effective medical treatments and therapeutic interventions, as well as the opportunity to gain a better understanding about prevention strategies. Additionally, it has always been important for me to do whatever I can to advance equity any way I can, and health equity is very important to me both personally and professionally.

Q: How is All of Us different from other research studies?

A: All of Us is unique for several reasons. First of all, it will not focus on specific illnesses like most medical studies – we want to get a broad picture of health and wellness. Second, All of Us is committed to being inclusive and receptive to participant input. Finally, the data that are gathered in this study will be available to diverse medical researchers and will be available for future research across myriad diseases and ailments. We hope that this will accelerate medical breakthroughs for more people.

Q: How does having health data from a large research community benefit different areas of medicine?

A: One of the unique aspects of this program is its breadth. All of Us can provide a baseline picture of health, and this could be beneficial to cardiology, endocrinology, oncology, pediatrics – you name it. All of Us isn’t like a clinical trial because we aren’t studying one specific disease. Instead, we’re building a research database to allow researchers to study any disease in the future.

Q: Why is this work so important for biomedical research?

A: Doctors are doing great work with the science that is currently available, but there’s still a lot we don’t know about health and health disparities, particularly for individuals who are underrepresented in biomedical research. In our current health care system, oftentimes people who live very different lives (different genetic backgrounds, lifestyles, environments) are typically treated similarly. We hope that our program will add significantly to biomedical research and lead to advancements that enhance health care professionals’ ability to specifically tailor prevention and treatment strategies to each of us as unique individuals.

Q: What are some of the challenges of enrolling participants in the program?

A: Some of the greatest challenges come from the damage done by historic transgressions in biomedical research and large-scale studies, ranging from Henrietta Lacks to the Tuskegee Syphilis Study. These egregious abuses have understandably caused many individuals to be hesitant or skeptical when considering whether or not to share their medical information or participate in research. Our job is to acknowledge the legitimacy, fear, concerns, and mistrust these unfortunate historic actions have instilled in many of the communities we are attempting to engage and do what we can to demonstrate the importance of participation in biomedical research.

As part of our process, we inform potential participants about the changes and protections put in place to protect research participants. We also share that our program has many safeguards to protect participant data and privacy, through the Precision Medicine Initiative (PMI) Privacy and Trust Principles and the PMI Data Security Policy and Framework, both of which are foundational elements of our program.

And most importantly, we must make it absolutely clear that our mission is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care, not just for some of us, but for all of us!

Q: What significance does All of Us have for rural health care?

A: There are many communities who are underrepresented in biomedical research, and unfortunately, this underrepresentation can often lead to disparate treatment, care, and outcomes. We know that rural communities are often neglected in medical research and face an uphill battle when it comes to getting quality treatment and preventive care. Studies show that health outcomes for those who live in rural areas are much lower than those in other parts of the country. We want our program to be a game changer in this regard. All of Us is committed to including individuals who have been previously excluded from these studies. Our goal is to achieve diversity in our program participants, reflecting the rich diversity of our nation. It’s our mission to help improve the outcomes for all of us, literally and figuratively, and that certainly includes rural America.

Q: What role do community groups have in promoting All of Us?

A: Our community partners are absolutely essential to the success of All of Us, and it has been rewarding to see the way our partners have embraced the program. They recognize the importance of medical research in creating healthier, stronger futures for members of these unique and diverse communities and acknowledge that they need to be a part of the change if they’re going to ultimately benefit. Our partners are actively helping to educate and motivate the diverse communities they serve to join and remain in the program.

The National Rural Health Association is an exemplary partner in this regard, and we look forward to continuing this relationship as we work toward our goal of one million or more participants.

Q: How can the medical community help you get closer to enrollment goals?

A: Health professionals and NRHA members are among the most trusted and respected professionals in the world. We know that potential participants will want to hear from you as their health care providers when it comes to learning about and engaging in research studies. Your patients will want to know what you think about the All of Us Research Program, precision medicine generally, what impact it may have for them, their children, and future generations of their families.

Health professionals can help us get closer to our enrollment goals by first learning more about and enrolling in the All of Us Research Program themselves. We also benefit greatly when health professionals inform their patients about the importance and benefits of research participation. And of course, we encourage everyone to share the news about our program with friends, family members, and colleagues across the nation.

Through the All of Us Research Program, our mission is simple, but bold: to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. Health professionals and NRHA members are critical to meeting that mission.

It’s our mission to help improve the outcomes for all of us, literally and figuratively, and that certainly includes rural America.