By Ariel Worthy
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 will 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.
Bruce R. Korf, MD, PhD, is the Chief Genomics Officer, UAB Medicine and co-principal investigator of the All of Us Southern Network. Here, Dr. Korf discusses the program.
What is your role with All of Us? “My role is to make sure that we fulfill our obligations as a network. Study progress reports flow through my office. A lot of what I do is keep in touch with our collaborators and make sure they know where we are and help them overcome obstacles they may have faced.”
Why is All of Us Research important, specifically for this region? “All of Us is going to be collecting the data that will fuel precision medicine for the coming generation. It will help reveal the individual risk factors for diseases and how one person differs from another in terms of how you should be treating them. That’s the big picture of what All of Us will accomplish. The All of Us study is important in our region because there are populations in our area that could be at great risk of being left out of this process if we don’t work hard to engage them. If all people in our region are going to benefit from what is learned from All of Us, it will be critical that we work with them to earn their trust and support their participation in the project.”
Talk about the importance of diversity for All of Us: “People differ from one another in many ways, including in their genetic constitution. For example, some may have higher chances of responding to one particular medicine than another. We will only know this if diverse populations in our region are represented in the data collection that will ultimately inform us how to make the best medical decisions for persons of all backgrounds.”
With a study of this size focusing on precision medicine, what does it say about the future of medicine in this country? “For most of the history of medicine, new approaches to diagnosis and treatment were developed based on large population studies, but participation of diverse groups did not always occur. The approach may have been validated for most persons involved in the study, but not all people might have responded in the same way and some groups may not have been involved at all. When you’re treating a particular person with a medication that was tested on large populations, all you care about is whether your patient is going to benefit or not. Suppose, for example, that 70 percent of people benefitted in a large population. That may be enough to justify approving that medication for use, but when you’re in clinic you don’t want to know if 70 percent responded, you want to know if your patient is going to respond. If so, you may put them on treatment; if they are not going to respond, you’d like to know that from the start, so you don’t put them on something that’s not going to work but may expose them to potential side effects. Choosing the wrong treatment for a particular person delays effective treatment, risks side effects, and wastes money. The precision medicine initiative is designed to avoid this problem by helping to figure out how to predict who is going to respond to what treatment and in what way will they respond? So in the future when you see a person in clinic, you’re not saying, ‘There’s a 70 percent chance this drug is going to work based on some large population study,’ but rather, ‘we expect that this drug is going to work for you, or if not we’ll seek another treatment.’”
You all have participant input in this research study. Is this something that happens often and why does this matter: “There’s a recognition that individuals in diverse communities expect to be involved in how the study is designed and how it is conducted. This is not just a matter of a group of scientists saying ‘here’s how it’s going to be, take it or leave it.’ We understand that people want to be more active and involved than that. You can’t expect people to trust you to do the right thing with the data if you’re not willing to trust them to have a voice in the way the study is set up.
For those who are skeptical, what would you tell them to join: “I would focus on three things: Why this is important, what you get out of it and how safe is it? Why it’s important – this is going to inform the next generation on how medicine will be practiced. If you want to be part of a historical research enterprise here’s your chance. If you want people like yourself to benefit from this and be part of the process here’s your opportunity to do it.”
“The second thing is a bit more personal. There is a commitment to transparency of data. This is not a study where you give a blood sample and never hear from anyone. This is a study where you’re going to be asked along the way if you want access to information learned about you. You will have the opportunity to learn things about yourself as the study proceeds.
“Third, anybody participating in the study should be reassured there are multiple levels of state-of-the-art security for all the data collected, making it as safe as possible. Security is a major focus of the program from the leadership on down. Everyone involved knows that it is critical to maintain the highest level of security possible.”
MORE ABOUT ALL OF US
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 will 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.
The mission of All of Us is to speed up health research. One million people are being asked to share their unique health data. This information will be added to a database. Researchers can then access this data to conduct thousands of studies on health and disease.
The goal for the entire Southern Network of All of Us is 20,000 participants per year for five years, total of 100,000. The Southern Network is Alabama, Mississippi and Louisiana.
For more information call (833) JOIN-UAB, email allofus@uabmc.edu, or visit JoinAllofUs.org/southern.
