Minorities are often not accurately represented in clinical trials. For example, although Hispanics comprise 17% of the population of the United States, in terms of participants in nationwide clinical trials, only 1% are of Hispanic origin. The All of Us Research Program is determined to change this.
Norma G. Cuellar, PhD, RN, FAAN, president of the National Association of Hispanic Nurses (NAHN) and a professor at the University of Alabama Capstone College of Nursing, took time to explain all about All of Us.
What is All of Us and how does it work? How is the program attracting participants?
The All of Us Research Program is a historic effort to gather data over many years from one million or more people living in the United States, with the ultimate goal of accelerating research and improving health.
After completing the consent process, participants will be asked to contribute information about their medical history and lifestyle. Participants, who come from all 50 states, may also be asked to have their physical measurements (blood pressure, height, and weight, etc.) taken at a local enrollment center and/or to donate blood and urine samples. They will have access to their study results, along with summarized data from across the program.
NAHN is a community partner in the Community & Provider Gateway Initiative (CPGI), a part of the All of Us Research Program with the National Institutes of Health. NAHN has joined the effort to promote awareness of the initiative among health care providers of Latinxs and the Latinx community. NAHN, like other partners, are holding local events within communities such as webinars, booths at festivals, and sharing information at local health fairs.
Additionally, the program has two mobile exhibits, called the All of Us Journey, which tours the U.S. to spread awareness and educate communities about the program. The second Journey bus has an enrollment center on it that allows visitors to enroll in the program on-site.
We now have more than 200,000 participants enrolled and are on target with our goal of having at least 75% of our participants come from historically underrepresented communities in biomedical research. This is why our work at NAHN to raise awareness within the community is so important.
Diversity is a core part of All of Us, and our goal is to achieve “quadruple diversity” – diversity of people, geography, health status, and data types.
What kind of data are you collecting and why? Who will be able to gain access to this data? What will they be using it for?
After participants complete the consent process, they will be asked to contribute information about their medical history and lifestyle and can even opt to share their electronic health record. The next step, participants will be asked to share their physical measurements (blood pressure, height and weight, etc.) and donate blood and urine samples, which is captured at a local enrollment center. This year, the program announced a partnership with Fitbit to enable participants to sync their wearable device with their All of Us account to share data such as the number of steps they take daily. As technology improves, the program hopes to increase the types of data it collects.
The program will have the scale and scope to enable research for a wide range of health research. A research program of this size will have the statistical power to detect associations between environmental and/or biological exposures and a wide variety of health outcomes.
Examples of the scientific opportunities presented by the program are:
- Develop ways to measure risk for a range of diseases based on environmental exposures, genetic factors, and interactions between the two
- Identify the causes of individual differences in response to commonly used drugs (commonly referred to as pharmacogenomics)
- Discover biological markers that signal increased or decreased risk of developing common diseases
And in May 2019, the program released their beta version of its interactive Data Browser, to provide a first look at the data that participants are sharing for health research. For researchers like myself, this is really exciting!
Participants, researchers, citizen scientists, and other members of the public may use the online tool to learn more about the All of Us participant community and explore summary data. Later, researchers will be able to request access to more in-depth data for use in a wide range of studies that may lead to more customized ways to prevent and treat disease.
The program is said to run for 10 years. So will researchers be accessing the information for the remaining nine years? Or do you need to hit a certain number of people to begin making the information available?
The program launched their beta version of its interactive Data Browser, and later, more in-depth data will be available through the Researcher Workbench. Researchers seeking access to more in-depth data than the public Data Browser will need to register, complete researcher ethics training, and sign a data use agreement.
Just as diversity in participants and in data types is important to All of Us, so is the diversity in researchers. As a researcher, I’m looking forward to seeing what opportunities to advance precision medicine will be possible with the All of Us unique data set.
How and why will this help research? In what ways?
Building a diverse research cohort of one million or more people will enable researchers to conduct medical research that is more reflective of the diverse population of the United States. Nationally, the growth of the Hispanic population has remained consistent, and it is expected to reach 28.6% by 2060. The All of Us Research Program will advance precision medicine and ensure that no one is left behind in future studies—including the Hispanic community.
For more information, visit JoinAllofUs.org.
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