Birmingham Medical News Podcast: Dr. Roger Smalligan of All of Us Research Program (NIH Sponsored)

Episode 14 October 05, 2023 00:30:41
Birmingham Medical News Podcast: Dr. Roger Smalligan of All of Us Research Program (NIH Sponsored)
Kassouf Podcast Network
Birmingham Medical News Podcast: Dr. Roger Smalligan of All of Us Research Program (NIH Sponsored)

Oct 05 2023 | 00:30:41


Hosted By

Tara Arrington

Show Notes

For this episode, the Birmingham Medical News Podcast is coming to the Kassouf feed! We're excited to partner with BMN to help them produce their new podcast. If you'd like to follow their show, visit their website.

Host Steve Spencer is joined by Roger Smalligan, MD of the All of Us Research Program. This NIH-sponsored program is historic effort to collect and study data from one million or more people living in the United States. The goal of the program is better health for all of us. More information: 


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Episode Transcript

[00:00:01] Speaker A: Today's podcast is sponsored by Thomas Stroud and his team with PNC Healthcare Banking. Thomas Stroud specializes in healthcare banking. That's all he does, because working exclusively with healthcare providers gives him insight into the healthcare industry to provide you with a broad range of financing options tailored to the industry and can be specific to your practice. Because they understand healthcare, they know how to do the little things. For example, they can help make your revenue cycle as efficient as possible. And, of course, we all know how important compliance and security are in healthcare. Thomas Stroud and his team at PNC Healthcare Banking understand the importance of data security. They have leading security protocols, and they're well versed in HIPA. Thomas Stroud doesn't look at you as a quick one time loan. No. He and his team strive to be your long term partner in a success. They're reliable and they're knowledgeable. Contact them today to schedule a consultation. Hi, everybody. I'm Steve Spencer. I'm the founder of the Birmingham Medical News. Since 2004, we've been providing the Alabama healthcare community with all sorts of information on healthcare. This podcast is not only for healthcare professionals, but also for regular folks, whether you're an insurance salesman, a lawyer, or a carpenter. And hopefully you'll learn some things about healthcare conditions that you might be worried about or you may just want to learn about. Hey, we want to really thank Kasufin Company. Kasufin Company is our partner in this podcast. They are a 90 year old CPA firm founded in Birmingham. We are actually doing this from their studio. It's a first class studio. And the maestro is right here with me, Russ Dorsey. [00:01:59] Speaker B: It's the highlight of my week. Steve, down here with you, for sure. [00:02:03] Speaker A: There you go, Russ. I understand that you all have a big healthcare practice. [00:02:08] Speaker B: We do have over 50 CPAs and healthcare consultants in that group. Been doing it 40 years. So we are one of the leading in pioneering in that. But also to call out the other services that we have here, between the wealth management, financial planning, retirement plans. [00:02:24] Speaker A: I know y'all also do trust and estate management advisory services. You guys stay pretty busy, don't you? [00:02:31] Speaker B: Yeah, and we actually do tax returns, too, at the end of the day. [00:02:35] Speaker A: A CPA firm that does tax returns, who would have thunk it? [00:02:38] Speaker B: No, we're glad to be partnered with Birmingham Medical News on this. And again, it is highlighted my week. [00:02:44] Speaker A: And one last thing. Now, I can't let you go here without giving you a little props on this. Kasuf was nationally recognized as a best firm to work with, to work for. I'm sorry. So do you find that to be true? [00:02:58] Speaker B: Best firm and actually recognized year after year on that one? We're a top 300 firm nationally. And, yeah, it's a really great place to be. [00:03:08] Speaker A: Okay, so today we're talking with Dr. Roger Smolligan. He is the Associate Dean of the UAB, Huntsville campus, and he is working with the all of US research program, which is an amazing, really interesting program. I think you're going to find this really interesting. So without further ado, Dr. Smalligan, tell us a little bit about yourself, about your background. [00:03:35] Speaker C: Well, thank you, Steve, for having me on today. This is a privilege. And yeah, basically, I'm a product of Johns Hopkins Medical School and then trained in internal medicine, pediatrics, did the Med Peach program at Vanderbilt, and have always stayed pretty much in the general medicine field, but got interested in international health as well. But I've really been pretty involved with this all of US. Genetic research program now for the past six years. I'm the site pi up here in Huntsville for the all of US program, which is this NIH funded research program that we're going to talk about today. And so I really appreciate you giving me an opportunity to share that with you. [00:04:19] Speaker A: Well, I knew only a little bit about the program till we talked on the phone the other day, and I think it's really interesting. So I guess we'll start with tell everybody what the program actually is. [00:04:34] Speaker C: Yeah, so I think it was the brainchild of a number of world renowned geneticists and data scientists. And I think as they talked about it, the idea came up. What if we were to create a database that would be available to researchers all over the world and give them something so large and so detailed and so powerful that they could really look for new treatments, new diagnoses, new approaches to medicine in an effort to get to this idea of precision medicine or personalized medicine? And so the idea came up. Let's recruit 1 million people in the United States of all backgrounds, especially working to make it a very diverse group, maybe groups that have previously been underrepresented in medical research. Recruit this diverse group of 1 million people. Ask them to be participants over a ten year period, and ask them to give us access to their medical records. Have them give blood, urine measurements, blood pressure, et cetera, all kinds of data that would be, of course, very carefully protected, and put this all in a Deidentified database, and then allow researchers to use the human genome of this 1 million people, combined with their medical record. Imagine the list of medicines that they're on, their diseases, their disease processes that are known, and even be able to follow their responses to different medicines. You could actually go to that level of detail. So you've got the human genome, you've got the medical record, and also you ask them to fill out surveys as we go along about lifestyle, about environment, about family history. All of these types of things get fed into this massive database, the all of US database, and then allow researchers to dream and if they meet criteria to access the data, the Deidentified database to begin to do projects. And it's really been exciting to see this roll out as we're doing right now. [00:06:43] Speaker A: You mentioned how they may respond to various drugs. So let's just take for an example, since it's over a ten year period, suppose somebody I don't so they take a drug for a specific condition. So how would that work? I assume with their medical records, it's just going to show how they respond. [00:07:01] Speaker C: And you, you know, once we get every many major hospitals now have the electronic medical record. So, for example, let's take me, I'm a patient right here at UAB Huntsville campus. When I come to the doctor here, they take my blood pressure, they take my weight, my history is updated when I start a new medicine, et cetera. This is all put into the computer. [00:07:26] Speaker A: Okay? [00:07:27] Speaker C: So this level of data is now continuously. Every month we're feeding that level of data on everyone who has signed up to be a participant. I was participant number one in Huntsville, Alabama, this project. [00:07:40] Speaker A: That's great. [00:07:41] Speaker C: So I thought as the site pi here, I should show my commitment and become a member. So anyway, that's the level of data that you're getting on the patient's. So they're going to know my blood pressure and they see, well, the computer, you could say, well, he started, let's say, Amlodapine two months ago. Here he is, three months later, we have some more data. And I'm not saying that we would not do it to that level probably at this moment, but this is the dream and this is what's when you get this database completely fleshed out and filled, we're at 640,000 consented people. Right now, we're going for 1 million. Yeah, but I want to go back to your point about taking a particular medicine because I have in front of me here an article from JAMA from two months ago in April of 2023. And I think this is a great example of what is going to be able to be looked into in the future. [00:08:36] Speaker A: Okay? [00:08:36] Speaker C: And this was a study where somebody had the idea, how much different do individuals respond to particular classes of antihypertensives? Obviously, that's a huge risk factor for stroke, for heart attack, as everyone listening to this podcast knows. So what they did in this study in JAMA was they gave participants for an entire month. These were new people with new diagnoses of mild to moderate high blood pressure. And they gave them the first month, they gave them a diuretic, and then they followed the blood pressure with Ambulatory blood pressures, and they saw how well that did. Then they did a calcium channel blocker. I've already mentioned Amlodapine. Then they did an Ace inhibitor for a month. Then they did I think it was two months. Then they did two months of an ARB. And what was very interesting was that the same individual had markedly different responses to these four medications across the entire it was a small study, 300 people, but roughly but it's fascinating to see. And then their whole point is this is individualized or precision medicine. If we can sort this out and figure out and see with the all of US program, we hope to have enough data to determine things like this, so that when I go to the doctor in the future and I have high blood pressure, they don't just do what we do now, which is pick one of these medicines and try it. When you come back, we see how well it worked. No, we're going to say, hey, you know what? Based on your genome and based on what we've found among other people like you and your genetic makeup, who they do really well with a calcium channel blocker, or they do really well with an ace, or they do really well with an ARB and make it very individualized. Yeah. [00:10:18] Speaker A: That's interesting. So it'll be really specific. Yeah, it's neat. I'm just kind of thinking it through. So you got a million people, and let's say, I don't know, let's say 50,000 of those people, as you said, have a high blood pressure. So you'll be able to look at those genomes and you might find, well, gosh, 90% of the people with this specific genome do really well with this drug. [00:10:40] Speaker C: Exactly. [00:10:41] Speaker A: Yeah. That's great. That's great. What kind of disease states will you see it working with? I guess? [00:10:50] Speaker C: Well, that's a good segue into what can the participants expect to receive up front from this program? And aside from their $25 gift card, which is included if they sign up, beyond that, they get an incredible report on they get to find out some about their ancestry. Oh, wow. I've received mine from this program, and it's not super precise, but they put on a map roughly where my ancestors are from. [00:11:23] Speaker A: Okay. [00:11:24] Speaker C: Which I found interesting. Yeah. Then you also get some reports on different physical characteristics or traits that you're likely to have based on your genome, which they have run. Probably one of the most useful and huge savings to individuals is that we run the entire list of what we call actionable genes on every participant. [00:11:50] Speaker A: Okay. [00:11:51] Speaker C: So it's currently about close to 60 different genes that we're going to look for that we know are highly associated with risk for a particular condition. So maybe one of the most common ones everybody's going to think about is the Brica one or BRCA one or BRCA two that's included in this testing. So they'll test for that. They'll test for all kinds. Think of any known disorder that has a true genetic component to it. Familial hypercholesterolemia, familial polyposis. Again, there's 60 of them. And the good thing is you will get a report and you will be told, and you can decide to receive this information or not, but you'll be told that you have this gene. This puts you at risk for this. If you would like to talk to a genetics counselor, here's how we go about that. So this project is very well organized and very well set up to help people if they are found to have a genetic risk for a disease. [00:12:56] Speaker A: Okay? Now, the program you said has been going six years and you're following people for ten years. When will some of these things be put into action? [00:13:06] Speaker C: Or are they now as much as I have described to you is already happening, okay. Including to the point that we are now releasing the database to qualified researchers. And if you're a physician or a person, a scientist who's listening to this, there are ways to gain access right now. And they take you through some basic training of how to access the database. And I think you have to show your credentials by the appropriate manner, but you can do that. And this is already happening. So, for example, G Six PD deficiency has typically, I think, genetics research is focused on a particular gene and we could test for that and say you have a risk for those who don't know that can lead to severe anemia and fatigue and et cetera, a number of symptoms. And you really want to know if you have G Six PD deficiency. Certain medications need to be avoided. So anyway, through this, researchers have gotten and used our database, I'm calling it ours, that's in a very loose sense of the term. They've used the database to look at G Six PD. In particular, they have found 118 variants of the G Six PD genetic defect that we thought was the main cause of G Six PD of that whole syndrome. But now we know they found 118 new variations that are also important in finding people who are at risk for. [00:14:42] Speaker A: This disease of the same gene. Is that right? [00:14:45] Speaker C: Yes. Wow. [00:14:46] Speaker A: Okay. Yeah, that's interesting. Any other ways you see researchers? I'm sure there's all kind of trails that could go down, researchers using. [00:14:58] Speaker C: Well, you know, I think some of the you know, the the ones that are on all of our minds right now are, you know, the the neurodegenerative diseases, you know, as as I age, and we all age, we all worry about dementia, we worry about Alzheimer's disease. These are things that now imagine the power of the genetic. Are we going to discover genetic precursors? We know a lot about those diseases already, and there's incredible amount of research going on. Unfortunately, thus far, that a lot of the medications have not been as impactful as we have hoped. Despite the release of new medications. It's kind of debatable the true impact that those are having clinically on people. But that's a condition we really want to know more about and we want to know how can we find it earlier if we can find a genetic predisposition and then find a medication. I think everything we're trying right now, I think most leaders in that field believe that we're getting in the game too late. Almost every drug that we have right now for dementia or Alzheimer's is only indicated when they're in the moderate, which is pretty far advanced. [00:16:11] Speaker A: Sure. [00:16:11] Speaker C: The moderate phase. We don't want to be there. We want to catch this before they're to that point, if we can find something that can change the course of the disease based on the genome or maybe genome plus environment, genome plus previous medication exposure, who knows what the answer is going to be? So anyway, that's one I mean, think of how common you said hypertension. It's extremely common. Diabetes, it's some incredible number of I think it's 20% of the population. Ten to 20% of the population. I don't have it on top of my head have diabetes. Think of the obesity epidemic, right? And then think about environment, think about genes, think about lifestyle. These are all of the things that are being fed into this is the type of information being fed into the all of US database. [00:17:06] Speaker A: I'm glad you mentioned environment. I was thinking about that because I know that please correct me because I'm not a researcher, but I think isn't it true that there's some questions over, like, with aging in various diseases that happen as we age, over how much is the genome and how much is the epigenome? [00:17:35] Speaker C: Absolutely. I was reading another article today where there's some concern that in certain populations and that's who we are recruiting to this we're recruiting a diverse population. But there's some concern that what we're calling the social determinants of health may have an even greater impact on the risk of stroke for people, for participants, for people in the United States, that may be even more important, their social determinants of health. So their situation, their living situation, are they living in poverty? Do they have access to health care? Do they have access to medication? Do they have access to physicians, et cetera, and to transportation? All of these things to a healthy diet. Imagine the impact of a healthy diet. We all know that the best results coming out for both hypertension and heart disease prevention, et cetera, I think, is leaning towards the Dash diet, where you have a lower salt and over healthier diet, but that takes money to buy the right foods, and you have to be where they're available. We have things called food deserts. [00:18:50] Speaker A: Exactly. Some areas it's just not available. And did you see gosh, it must have been 20 years ago. Guy did the documentary. Super sized me. Did you see that? [00:19:01] Speaker C: I did, yes. Incredible. [00:19:03] Speaker A: Gosh, after a month, he was sick. I think he had to be hospitalized. I think you're I mean, I think diet is huge, and now I'm kind of just getting on my own so far. I think so many folks in America really don't eat a good diet. I'm sorry, I'm getting off into the environmental epigenetic stuff, but we're learning that even things like loneliness and stress affect all that. [00:19:32] Speaker C: Absolutely, and that's a good point. And this project is because it's an ongoing project and because we encourage ongoing engagement of the participants in the study, even though there's not ongoing financial support to the person in the study, we want them to realize they're investing in their children's and their grandchildren's future to find new answers for them. And you bring up the whole loneliness and that kind of thing. And that reminded me that when we got into COVID, the study leaders said, we need to send out some surveys to our participants and ask them how they're doing. Ask them what kind of stress they're under. Ask them if they've had a pay cut, if they've lost their job, if they worry about their health, if they've had family members die. Of COVID All of these kinds of things have now been collected and can also be things that are introduced into studies going forward. And we have imagine we have the blood, we know the stress hormones that were present in the blood. To be honest, I don't know exactly how much of the serum is saved on each participant for future look backs. [00:20:44] Speaker A: Is the only blood test at the beginning. Would somebody take blood tests over the next? [00:20:48] Speaker C: That's a great question, and that is being addressed right now. Okay. This study, I think, is being developed as we go along. We started out with one blood draw, but I signed up last week for our site. The NIH Bethesda group reached out to all of us in the country who are in the program here and said, who of you have the capacity and are prepared and ready to begin to gather samples again so that we can have that comparator opportunity to compare results five years later? Because like I said, I joined about five years ago. [00:21:29] Speaker A: Yeah. And it'd be really interesting to have taken the people their initial blood test and right after COVID taken it. When you had that stress and loneliness, you probably seen a lot of changes then. [00:21:40] Speaker C: Absolutely. There's another thing. Things are happening all the time. My parents are 89 years old. They're in the study. Oh, wow. And they showed me their phones the other day and they said, hey, look what we're being invited to from all of us. Well, all of us reached out to them last week and said, we want to give you a fitbit because we're interested in how active you are, how many steps a day you're getting, and if you'd like to participate, we would love to send you this device and help you know how to use it. And that data will be synced to the entire database. And so that's being rolled out right now. Other things will be offered to those who participate. For example, another joint project just got rolled out by the NIH, which is open to all of us participants. And this is specifically to look at the impact of diet. It's a nutrition it's a nutrition study that's that's being rolled out jointly with this All Of US program, which I think is going to be fascinating. [00:22:44] Speaker A: Will you just self report your diet or what will they do? [00:22:48] Speaker C: This one actually comes with a fair amount of financial support to the participant because no, they're going to actually send you your diet, I understand, for specific meals for short periods of time. [00:23:01] Speaker A: Oh, my gosh. [00:23:03] Speaker C: They're going to say, we want you to drink this protein drink breakfast. [00:23:06] Speaker A: Okay. [00:23:07] Speaker C: And then we want you to drink two of them at lunch. I don't know exactly how it works, but I know that there are specific food products so that we know exactly what the person's putting in their body. That is neat, asking them to sign up and say, we will abide by this. And then when they do so, and those folks are going to have more visits to be able to draw blood and see how they respond to these different loads of protein and carbohydrates, that kind of thing. [00:23:31] Speaker A: It's going to be very interesting, very interesting. Especially folks that have may have been, as you say, in a food desert. If you change that diet, see if you see some good results, that'd be really you know, I'm so sorry that I didn't because I didn't realize we'd be talking about diet. There was a oh, boy, I wish there was a press release I got about three weeks ago from UAB. And it was a study, I'm sorry, because I don't remember the details, but they had done a study, I think it was with women, and they had given them a specific not only diet. I remember one of the things they wanted to do was drink peanut oil every day. Yeah, it was specific not only diet, but a couple of supplements. And they tested them, and I think they were testing to see how it affected their health, and I think it went pretty well. But anyway, I think that's really interesting. [00:24:23] Speaker C: Yes. [00:24:24] Speaker A: And the diet. Oh, and the fitbit. I love that they can get so much information off of Fitbit. Yes, obviously how many steps you take. But they'd also get something about your sleep cycle, wouldn't they? [00:24:38] Speaker C: Absolutely. [00:24:41] Speaker A: Know. [00:24:41] Speaker C: There's a lot of data. Now they're saying, I haven't read this particular scientific article yet, but I'm seeing headlines like you've alluded to that. We believe that sleep we know that sleep apnea has a huge impact on health, blood pressure and blood sugar control and even, I think, how you feel during the day and et cetera, et cetera. But even just general sleep habits, we believe are having a real impact on people's health and their outcomes. And you're right, when you put a Fitbit on folks and they agree to share it in this very carefully controlled database that actually the data, if I'm not mistaken, is managed through the cybersecurity experts. It happens to be being managed, I believe, at Vanderbilt University. But regardless, it's being highly and it's deidentified, but obviously in the background, we have enough connections to know that whose Fitbit goes to who at the same. [00:25:39] Speaker A: Time, when you're connecting their genome, their original blood draw, and with all the information you're getting on Fitbit sleep steps, I'm sure so much more. Does it give you blood pressure? [00:25:52] Speaker C: I'm not sure if it does not do blood pressure, but I'm not sure by now. It may be able to give heart rate. I'm not sure about that. [00:26:00] Speaker A: Yeah, so that'll be fantastic information. [00:26:04] Speaker C: Yeah. [00:26:05] Speaker A: I'm sure you know this. I've read that you mentioned, obviously lack of sleep or bad sleep, like sleep, but I've read that some people think that even just your circadian rhythm. [00:26:20] Speaker C: We. [00:26:20] Speaker A: Know if we stay even if you get 8 hours, there's a difference between getting 8 hours from nine to five or so versus one in the morning till eight. [00:26:31] Speaker C: Right. [00:26:32] Speaker A: So I think that'll be really interesting. [00:26:35] Speaker C: Yeah. I think there's truly a world of information out there that's just waiting to be analyzed and researchers dream up their next question. Give me, like you pointed out, give me the 100,000 or 150,000 people with diabetes. And you can say maybe you think that their starting weight has something to do with it. And you want to take those who weigh between this and this. You can really pick out your subgroup that you want to study. [00:27:05] Speaker A: I know there won't be everybody but the folks who also done the Fitbit. You may can look at diabetes starting. I mean, I think that's fantastic. And I guess and you basically just said that the studies can be almost anything somebody I mean, anything somebody thinks of, whatever a researcher dreams up, you're going to have all the data they can ever imagine. [00:27:33] Speaker C: Correct. [00:27:34] Speaker A: Do you have any thoughts on where it may go with some of the studies? [00:27:41] Speaker C: I think it really is, as you alluded to it's, really, truly endless. And maybe AI. I wouldn't be surprised if we're not going to use AI to help us explore new thoughts and new correlations when you put this amount of data, feed it into an AI system, and I think that could truly facilitate some new findings as well. [00:28:05] Speaker A: I didn't think about that until you just mentioned, but AI will be huge in this. Wow, really interesting. Any final thoughts or anything that we haven't talked about? [00:28:15] Speaker C: I want to invite everybody who's listening to join the program. [00:28:18] Speaker A: By the way, you and I were talking on the phone the other day, and I told you I want to do it. [00:28:22] Speaker C: Yeah. And be a part of it. It's fun to be a part of it is a large government program. You know how those may be a little bit more slow moving sometimes than the commercial product, but it's still an incredibly valuable, I think, contribution to science. And I think those of us who are involved in medicine, science, or just, if you're not contribute to new findings for yourself, for your kids, for your grandkids, it's real easy. Go to the Web and just type in And if you put Southern, that puts you right in our neighborhood, and it'll show you here's the six places around UAB, kirkland Clinic and the Callahan Eye and various places that name any major UAB setting in Birmingham. And you can go there. You can actually do a lot of the data entry by downloading the app. When you go to join all of us Southern, you can download the app and input and answer a lot of the questions and give your consent for this project. I helped a person through it, I think, in ten or 15 minutes the other day. [00:29:36] Speaker A: Okay. [00:29:37] Speaker C: And then that will feed your number to whatever site. You tell them, I want to go to Kirkland Clinic, or I want to go to wherever where you can go and then spend, hopefully, 15 to 30 minutes just getting your blood drawn, your height, your weight. Give a urine sample, and you're done. They hand you your $25 gift card, and you get to go spend. [00:29:56] Speaker A: Okay. Well, like I said, when you and I talked, I thought it'd be great just to be able to do it and not be charged for doing my genome. [00:30:04] Speaker C: I thought that was good enough right now. Do be patient. I'm not sure exactly at this moment what the turnaround time is after you give your blood. I'm guessing, to be honest, it may be a few months before it comes back, because it'll go through all this deidentification and sent to the right lab for processing, but does come back. I can testify to that. [00:30:27] Speaker A: Well, that's great. I really appreciate your time. I think it's really interesting. Like I said, I'm going to do it, too. [00:30:33] Speaker C: Well, wonderful. We'd love to have you, and I really appreciate you giving me an opportunity to share about this, all of us research program today. [00:30:39] Speaker A: No, thank you. Thank you.

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