Kelly Gebo is chief medical and scientific officer with the All of Us Research Program at the National Institutes of Health. Photo courtesy NIH

Kelly Gebo is chief medical and scientific officer with the All of Us Research Program at the National Institutes of Health. Photo courtesy NIH

Kelly Gebo, MD, MPH, recently joined the All of Us Research Program at the National Institutes of Health as chief medical and scientific officer. We asked Gebo for an update on the landmark initiative and its significance for the future of health research and, ultimately, improving health outcomes.

 

Q: Congratulations on the new position! As you join the effort, what excites you most about the All of Us Research Program?
Thank you! It is such a privilege to be a part of this historic program. My past experience has been in cohort research, data quality and analysis, and clinical care, making the All of Us Research Program a natural fit with my personal interests and professional expertise. I am energized by the promises of precision medicine, and I’m especially excited by the extraordinary efforts being taken to ensure diverse stakeholders across the country are represented in this program. This is an area where the research community has historically come up short, and it is wonderful to be a part of something this big, this different, and this meaningful.

Q: Can you briefly describe how the program works?
The All of Us Research Program has a simple mission – to accelerate health research and medical breakthroughs. To reach this goal, we’re asking 1 million or more people to share their health information to inform future health studies. Participants share their health data through surveys and electronic health records. Participants also may be asked to visit a local partner site to share physical measurements and blood and urine samples. Over time, there will be additional opportunities for participants to contribute data, through digital health technologies, ancillary studies, and other ways.

In the future, approved researchers—including citizen scientists—will use this data to conduct many types of studies with the hopes of finding patterns in the data to better prevent, diagnose, and treat disease for individuals. And, we will return information to participants, so they can learn more about themselves and the research the program supports.

Q: Why is it so important that we conduct research that includes people from communities that have been historically underrepresented?
Often times, health care has been delivered in a “one size fits all” model. That’s largely because previous research did not always appreciate the diversity in patient populations, and the resulting findings didn’t always take into account the differences in lifestyle, environment, and genetics that make us unique.

Our program is working to build a participant community that lives up to its name by reflecting the diversity of America. We have a special focus on including communities that have been historically underrepresented in research. That includes racial and ethnic minorities, as well as sexual and gender minorities, rural residents, seniors, people with low income or low educational attainment, people with disabilities, and people with limited access to health care. With a cohort this diverse—demographically, geographically, and medically—we can get a fuller picture of health in the U.S. and move toward more tailored prevention strategies and treatments.

Q: What kind of response has the program received?
The excitement around this program is contagious. More than 120,000 people have registered with the program as the first step in the participant journey, and more than 65,000 have completed all of the steps of the core protocol. I’m proud to report that, of those 65,000, nearly half are from racial and ethnic minority groups, and more than 75 percent are from communities that have been historically underrepresented in biomedical research. We’ve also brought more than 220 partner sites on board and launched a second traveling exhibit, the All of Us Journey, helping to expand access to the program to even more communities across the country.

We’ve also seen a good deal of interest from health care providers who want to engage with the program and researchers who can’t wait to access the data. We’ll release an initial set of data for analysis when we launch the All of Us Research Hub, but that will be just the beginning. Our data resource will grow richer and more useful over time, with input from participants and researchers.

Q: As you know, APHA is a partner with the National Institutes of Health and others in the All of Us Research Program. What can APHA members do to help support the program and spread the word?
We are grateful for APHA’s involvement in and support of the All of Us Research Program! We invite APHA members to enroll in the program and help spread the word to family, friends, and the communities they serve. Follow @AllofUsResearch on Instagram, Facebook and Twitter, and feel free to share updates about All of Us on your own social media by using the handle @AllofUsResearch and the hashtag #JoinAllofUs. You can direct anyone who is interested to www.joinallofus.org to learn more and sign up for email updates.

Learn more about All of Us at APHA’s 2018 Annual Meeting and Expo. Leaders will be talking about how the program will enhance precision medicine and public health during session 4127, “Public Health and Precision Medicine: The All of Us Research Program,” at 10:30 a.m. on Tuesday, Nov. 13.