Solomon Crenshaw Jr.
For The Birmingham Times
The goal of the All of Us Research Program is to help researchers understand more about why people get sick or stay healthy. People who join give information about their health, habits and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.
Dr. Monica L. Baskin is a professor and vice chair for culture and diversity in the Department of Medicine at the University of Alabama at Birmingham. She is also the engagement lead with the All of Us program.
Here, Baskin discusses the program.
Why is it important for the all of us research program to have diverse representation?
I think it’s really paramount to have diverse representation in the All of Us program because for too long there have been populations that have not been a part of research. And because of that, we don’t know as much as we need to know about why some people are sick and some people are healthy. In terms of the All of Us program, the goal is to enroll over a million individuals across the country that are representative of the U.S., making sure that we have individuals from all parts of the country, individuals that represent all the different races and ethnicities that are part of it, sexual and gender minority individuals and so forth. It’s really important that we have everyone that represents the U.S.to be a part of it so that we can learn more about how to improve health.
What does diversity mean?
In a broad sense, I think diversity is all the ways that we are similar and different. For the All of Us program, we really focus on making sure that those differences and similarities are represented in the participants that we’re targeting. We do want people from all walks of life, from different backgrounds and experiences. We want people who are generally healthy and we want people who may have had some problems with their health. We’re looking for all those ways in which we are similar and different so we can learn as much as possible about how to improve health and reduce disparities that we see. Not necessarily people who are sick. We can learn a lot from people who are healthy, and people who have been able to do well and have great lifestyles. We can learn a lot about what they are doing to remain healthy, and then we can use that information to then be able to figure out what we might do to help other people to prevent having complications or problems.
From what population demographics are you hoping to see more involvement as part of All of Us?
I think the groups that are typically underrepresented in research programs, we want to make sure that we have them in this program. Individuals who are from racial ethnic minorities, for example, African Americans, Hispanics and Latinos are historically not in health related research programs as much as other groups. But we also want to make sure we have a significant number of women, individuals who are gender minority, people who identify as (being) in the LGBTQ-plus population. We also want to make sure that there are sufficient numbers of individuals who identify as having a disability. Oftentimes that population is not involved, but it’s important for us to understand what’s happening with them and how they’re able to stay healthy and what some of their complications are. All those groups are ones that we hope to see enrolled in the All of Us program. As a researcher, it’s important for us to understand that some of it has to do with just not being aware of what’s out there. In the past, researchers have targeted groups that they know very well so many of the researchers have not reflected the diversity that exists in the U.S. Therefore, they’ve not targeted those populations. Another reason is that historically there have been some things in the past with research that are not really things that we’re proud of. There are things where people have been misled, or have not been given full informed consent about what the study is about. Therefore, we have to go back and and correct those actions and we need to educate people about what we’re doing right now to ensure that things in the past won’t be happening in the future.
What is the representation of people in the all of us program that come from underrepresented groups?
We’re really excited about the Southern Network. Over 80 percent of individuals that are part of our Southern Network (of the) All of Us program are from these underrepresented groups. This reflects again racial and ethnic background, gender minority, sexual minority, individuals with disabilities, individuals from rural populations and individuals with lower income, and those who have limited access to health care. We’re really excited. We lead the country in terms of a site that is bringing in many individuals who have historically not been in biomedical research.
Does the All of Us Research Program value community and partner participation and feedback? If so, how?
Absolutely. We absolutely value partner and community feedback. We have a number of ways in which we take that information in. First and foremost, we have a participant and community advisory board — about 25 or so individuals that are reflective of the demographics in the three states that we’re in — are part of this board. Some of them are actually participants so they know firsthand what it’s like to be enrolled in the program, what they have to do, and so forth. On a quarterly basis, we meet with them and they give us input about what they think we’re doing, how we can improve and all of that. That’s a great way that we get that feedback. We also have regular communications with partners. We partner with local neighborhood associations and other civic groups that are here locally, and they give us feedback as well. Ultimately, whatever feedback we get in through our website and from people who are enrolling, we want to hear that and, more importantly, we take that back to our leadership team to see if there’s anything that we can do to improve the experience, as well as to really motivate the rest of our staff about the things that they’re doing well.
What type of data are you trying to collect?
Ultimately, we want to know as much as possible about this diverse group of people. Some of it is demographics, just asking people about their life history, where they’ve lived. Those kinds of things have been very helpful for us to collect. We also collect some physical measurements — your height and weight, blood pressure … the kinds of things that you would do when you go to a well check with your doctor’s office. We also want to collect things about your lifestyle behavior. What are you eating? How much physical activity do you get? Lastly, for some participants, we collect biospecimens, we collect blood, perhaps urine. All that information (is collected) to get more information about their genetic composition and biomarkers for people who are participating as well. We also asked if we could have access to their electronic health records so we can kind of track their health over time as they are going through the program. We can then try to see if we can connect things with what they may be doing for their behaviors or where they live or other demographics, and how that syncs up with their health.
What does the All of Us Research Program hope to accomplish?
First and foremost I think that the overall program hopes to enroll this very large, diverse cohort of individuals that are reflective of the U.S. population. From that I think we want to learn as much as possible about who’s sick, and who’s healthy and see if there are things that we can pick out from all the information we collect on them to kind of predict who might be sick and who might be healthy so that we can advance medications and treatments and other prevention, that would improve the health of everyone. We want to just make sure that this is a wealth of data and information that we have that we can mine and analyze for years to come to give people the right type of treatment for their particular issues and their background.