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. Mona Fouad is a professor and director of the Division of Preventive Medicine at the University of Alabama at Birmingham. She is also one of three co-principal investigators of the All of Us program.
Here, Dr. Fouad discusses the program.
What are some changes to the All of Us Research Program during the COVID-19 pandemic?
Because of all the guidelines about social distancing we used to meet people in clinics and [talk] to them about the study, and then sign them up, and do some measurements, take some measurements on blood work. All this is really a little bit difficult now so we put everything on hold. Actually nationally, the program was put on hold but we still have our website. People can go to the website and enroll, sign up and register. Then when the time comes that we can do contacts and collect more physical measurements, they at least have the part that they can do online — like consenting, putting in their information. And we get back with them and respond to questions. But also we’re thinking creatively, like you have every place, like restaurants . . . you think about ways to do business so we’re hoping that we’re going to start something like the telehealth, some sort of video conferencing with people to collect information. We can help them do the enrolling process. We’re going be looking into following the telehealth method by videoconference and talk to people like we talk now, like in Zoom and get them screened then make sure that they are qualified to participate and answer their questions. Then we can help them to do all the parts that (don’t) need the measurements. Then when things allow us to do that, we can go back and schedule them for visits and complete their visits and information.
What is a COPE survey? What type of health data are you trying to collect through those series of surveys?
COPE stands for COvid-19 Participant Experience. COVID happened and you have a national program like this that focuses on precision medicine and also has thousands of people in it. It’s so very diverse. For our network here, Alabama, Mississippi and Louisiana we have 80 percent of our enrollees are coming from diverse populations — African Americans, Latinas, rural or low-income elderly. They felt that this can be a great opportunity for us to learn about their experience and how COVID impacted them. Hopefully in the future we’ll be linking some of this information to their clinical information or outcomes to know exactly how COVID impacted different groups if we want to get back to precision medicine. This is a survey that we rolled out just to check on people’s experience. Even the guidelines, how they did with the guidelines? how changing their environment impacted them? how stress and mental health, how they coped with that. If they had access to testing. If they had symptoms. If they had COVID and recovered, or where they are now. Since we have access to thousands of people, we felt that this COPE survey is going to be very, very important to be part of the All of Us. We shouldn’t miss that.
How many surveys are currently available for partners to complete?
Every month, they roll out a new survey. The COPE (survey) was just in addition to the regular surveys. But most of the surveys are related to lifestyle and what people are doing. We may even — COVID really delayed this — get this survey on social … health or nutrition and physical activity. Every month, we roll out a survey to learn how people do in their daily life and how (they’re) coping with certain health conditions. That’s why it’s important for people to go to their portal and look at what surveys are available and give us information. The whole thing is to look also at clinical health records but from just looking at clinical things doesn’t tell you much without really knowing how to link what they do and their health and how they feel and all this linking to the clinical information. Actually for All of Us, you’re linking, a lot of different information. You’re linking your reported information about your health and your lifestyle and your behavior and your access and how you feel and all that to your clinical information so it gives you a better picture, and then links to your other information. Like if we’re going to do some analysis of some of your tests of genetics. All this gives you a really good linking picture of you as a person. The way you treat you as a man is different than treating me as a woman. Me coming from ancestry (that is) Middle Eastern is probably different than you’re coming from your ancestry. The care is more targeted and more precise than one-size-fits-all.
How long are these surveys and how often are participants completing them?
Some of them are longer than others. To tell you the truth, we’ve been collecting feedback from participants and we’re working on making them more simpler and shorter. Scientists like to collect everything in the world, but we have also to be mindful of burden on participants. For example, the COVID survey now is like 38 questions. We wanted to make it shorter. We often try to make it easier and simpler for people. But every month the person goes to the portal to find the survey. Hopefully they can complete it. If they haven’t complete one before maybe they can do that if it’s still open. And we actually took the time of COVID when we couldn’t see people, our staff, instead of being out in the clinic enrolling people, has been calling people and reminding them and giving them the steps of how to get to the portal and how to do surveys. We’ve been using this time to help people to do that. I hope that they respond and follow up also with us.
Is All of Us studying COVID in other ways?
We partner with a lot of other groups and also the Centers for Disease Control and Prevention (CDC) to look into some of the data, the blood that we collected a long time ago. People wanted to look into antibodies and go back, even to January or December, to find out when really was the first cases of COVID. Could somebody have gotten it and we don’t know? Was it December? January? February? We don’t know. If we found those antibodies in someone that we collected the blood, say in January, and then we go back to December and we don’t find anything, then maybe it’s January. So COPE partnered with the CDC and other projects to see, looking back at their data and their cohorts to see when we started to seek help by looking into at the presence of antibodies for COVID. I don’t know the results yet of this but that’s what All of Us also contributed, which will be very important for us to know.
How do you protect the data collected from these surveys?
In general for any research we do, we have to follow all the data protections and confidentiality. There are a lot of safeguards to do that. But when you sign up, we remove your name and put a number so you cannot be identified. That is only a number so your information is not there. Then for sure, every database is protected by password codes and there’s certain people that can look at certain data and they sign confidentiality agreements. We as an institution to have to sign confidentiality agreements and … the institutional review board. The data is completely confidential. It’s encrypted. Even if anything happened to a system, nobody can know what’s going on there. But also all the names are removed. And nobody can access (the data) unless those people have (been) given the access and they have their own pass codes to do that.
When do you anticipate tangible trends/answers will be seen from this research?
I’m sure this is a long-term study because we want to have like a million people and we haven’t gotten to a million yet. The idea is to use this information that we’re collecting so scientists can access this information and answer questions on certain conditions, like diabetes, like heart disease. I’m hoping that after COVID is over, we get a lot of researchers to start looking at what we have collected so far and use this information to answer important questions. Hopefully you’re going to see more coming in the next year or two.