Episode 41: Takin' it to the Streets- Reimagining Research

Karie Dozer [00:00:05] I'm Karie Dozer and this is TGen Talks. You probably already know that TGen is a medical research institute. Its mission, earlier detection, smarter treatments, better outcomes. By finding the best treatments for your specific disease, TGen makes medicine more precise and more personalized. But with so many medical mysteries to solve, where does the scientist begin? In many cases, the search for a cure to one person's disease just might start out with a group of healthy people. The bigger the group, the better. I sat down with Dr. Matt Handelman, head of TGen neurobehavioral unit and founder of the Mind Croute Project, to find out how TGen conducts research and how he hopes to improve that process. But I began by asking about his other title, Professor of Neuro Genomics. 

Dr. Matthew Huentelman [00:00:57] Yeah, I teach every now and then, but professor really reflects my current rank within the academic system. 

Karie Dozer [00:01:04] OK, TGen stands for Translational Genomics Institute, which maybe most people don't even know. What does that mean? Translational genomics? 

Dr. Matthew Huentelman [00:01:13] It's a great question, actually. And I think if you asked different people in this building, they'd probably have a different definition for translational. But to me, what it means is that our science that we do here is trying to make an impact in medicine and health care as quickly as possible. So that's the translation. It's translating what we learn at the research bench upstairs to the patient bedside. And we oftentimes say bench to bed and then back to bench because we learn things as well when the patients are treated and followed and studied further. And sometimes those things, we take them back into the lab and improve our knowledge. So it's this iteration between the scientists, the doctors and the patients and all that continual interaction that really defines translation and translational research, in my opinion. 

Karie Dozer [00:02:12] So most people who are patients of a doctor in Phenix, Arizona, don't walk through the doors of TGen ever. It's just not a it's not a patient centered place. Right. So what is it that goes on behind these walls all day? And how do you how do you try to get it to that patient, to that bedside? 

Dr. Matthew Huentelman [00:02:32] Yeah, a lot of magic goes on. But you're right, a lot of times TGen might be helping with a patient's medical care and they may not even know it. So, you know, the example I often give is that TGen is frequently the intel inside of some of the patient care. And that's because we love collaborating. We love to work side by side with the treating physicians. And we don't need to be sitting there in the waiting room or in the office visit room, in the operating room to make a difference. 

Karie Dozer [00:03:09] How do you get that information if you're studying, let's say, Parkinson's disease or Alzheimer's disease, how do you get information from individual patients? And what are you what are you looking for? What makes a good study at the end of the day? 

Dr. Matthew Huentelman  [00:03:21] Yeah, it's a great, great question. And it's also right in my area of passion. So I believe the way we do this now in human translational research is outdated. And I think we really need to improve upon it. So how does it happen now? It's the way we were just talking about. We either ask people to come to our laboratories and hope they come. And oftentimes there's a lot of burden there. It's pretty insignificant to come to a laboratory and, you know, come visit a scientist and join their study. You have to take time out of your day and, you know, cost time and money. Other ways we recruit people to study is by partnering with physicians and waiting until they're sick and working alongside them in their medical clinics or in the emergency room or the hospital, for example. The sad thing is that's almost exactly as it was done 100 hundred years ago, so that really hasn't changed. Scientists find people to study by begging them to come to their labs or they work with sick people and they study sick people. So I'm really passionate that this needs to change. And that's what we've been doing for about the past decade with our work is really creating, exploring and demonstrating ways that this can change. 

Karie Dozer [00:04:41] So what's your big plan now, what's your next step, you want to go out into the communities and get to people because like you pointed out, I don't go see a doctor when I'm feeling great. I go to see a doctor when I don't feel well. And unfortunately, sometimes that first test or visit has a bad outcome, then I'm one of the sick people. That's when I start seeing a doctor. 

Dr. Matthew Huentelman  [00:04:59] That's exactly right. And that's a big point. By only studying people, once they become sick, we're learning really important things, but we're also missing a big part of the equation. What did you look like as you were getting sick? What did you look like when you were healthy and you started to get sick? That's an important sweet spot for us because we need to understand what's going on and healthy people before they are sick so we can help hopefully prevent disease. So, yes, we want to get out there into the community. We want to bring science to the end of your driveway, to your doorstep, maybe even to your local grocery store parking lot. And we want to make it easy for people to participate in research. By making it easy, we hope that we can study lots and lots of healthy people before they're sick and really build a community with them, a relationship with them, and understand their lives across time. And, yes, unfortunately, some of those people are going to get sick. But this is the perfect way to understand how to prevent disease. 

Karie Dozer [00:06:06] If you needed to study 100000 people for a particular project, what's the best way to go get 100000 people? I'm using that as an arbitrary number under a thousand people for a study if you're looking at something. 

Dr. Matthew Huentelman  [00:06:19] Yeah, I think it's really great that you chose that large number because I think that's the number we need to understand. Really, the variety out there in the human population, so we do need big numbers. It's really important, if you think about it, the traditional way to find 100000 people would be to partner with 30 institutes and have each one of them get a certain number of people. So complicated, very expensive and just a burden to manage. So our approach has been to use something that already is in all of our lives. It's starting to become ubiquitous now, and that's the Internet. So if we can have a study live on the Internet, be open to recruit people to join 24/7, then we can reach 100000 pretty quickly. Just based on our Mind crowd study, which is now eight years old, we recruit around 35000 people a year to that study. So in three years, you could reach 100000 by having a study like Minecraft on the Internet. 

Karie Dozer [00:07:20] And if we're talking about that particular study of one hundred thousand people looking into a disorder, you're still studying essentially healthy people, right? You're not studying people who suffer from a particular kind of cancer or who have a genetic predisposition. You're just taking a random sample of 100000 people and getting real data on an ongoing basis. How valuable is that? 

Dr. Matthew Huentelman  [00:07:43] Right. And I think that's a really important point. All too often we jump at the chance to study people who are sick or who are going through an illness or an episode with their disease and where we really should focus some of our effort. I would argue a lot more than we currently are is by studying these healthy people who we know, unfortunately, are going to end up getting sick. But studying them before that happens can really help us learn a lot about preventing disease. 

Karie Dozer [00:08:18] Let's say you have this mobile lab. It's up and running, ready to go, January 1st of twenty two. Where are you taking it? Who are you talking to and what are you looking for? What are you asking? 

Dr. Matthew Huentelman  [00:08:31] Yeah, well, we'll probably spend a lot of nights away from home, but these mobile laboratories are critical for a couple of reasons. First, let's think about it from a city centric reason. We already know that there are populations and Phoenix even who don't have the time, don't have the ability to come visit the research laboratories. If we don't see them, if they're not part of research, then we can't make the right public health decisions. We can't make the right public health recommendations for them. So it gives us a chance to get out into those neighborhoods, bring the science to them, make it easy to participate in. These are oftentimes underserved groups of people. So that's one thing that's a very city centric thing. But it's still important because we know, you know, not everyone can participate in research, even in a city infrastructure. But secondly, Arizona is a great example of a very rural state. We have a lot of people that live outside of cities and they certainly don't have the time, energy or money to just come visit, you know, the academic research labs in Phenix or Tucson, for example. So now we can bring the laboratory to them. We can come to Yuma, Arizona. We can come to the rural parts of the state and bring the research lab to them, make it easy to be involved, and we know people will then get involved. The Take-Home message is the important thing to remember is that without a doubt, race ethnic differences matter for disease risk and disease treatment. Geographical location, zip codes matter, and we have to do a better job of understanding that right now we know it matters, but we don't know how much it matters for all these various types of diseases and disorders and risk factors. So one way of addressing that is to make it easier to really understand all of those zip codes, all of those race ethnic differences. By powering up these mobile labs and bringing them to the participants, 

Karie Dozer [00:10:38] you can't do this by yourself. One guy with one van isn't going to get a whole lot of information. This is going to help you in this. Who else is going to have a mobile lab like you are driving around their state or city? 

Dr. Matthew Huentelman  [00:10:49] Yeah, that's right. So we have five collaborators already scattered mainly on the East Coast that will be launching these mobile labs as well. And surprisingly, if you start to do the math with a fleet of these mobile labs, you actually could cover the geography of the continental United States. It's not too far to get to that number. You know, it's a it's a few dozen of these, which is still a tall order, but it's affordable. And so this this vision of actually having mobile labs that are roaming the country in order to facilitate participating in research is a real one. This is this is where my mind is right now. How do we get there? Because I think it's the exact thing we should be doing. 

Karie Dozer [00:11:41] How do you change somebody's mind when they think that going to a doctor is for when you're sick? Because let's face it, most of us that's when we go. That's when we that's when we need the number we have to call in and get right. Get in right away because we're not feeling well. How do you change that mentality of going to see somebody to talk about how you're feeling when you're feeling fine? 

Dr. Matthew Huentelman  [00:12:00] I don't know that we need to change that mentality. I think that is partly ingrained into our health care system. You know, wellness visits are a thing, but we you know, we don't have a high compliance with those wellness visits. So this isn't I think we need to separate this idea about visiting a doctor when you're sick and getting treatment and thinking about that doctor's visit. We need to separate that from participating in research. Research should be a part of our daily life. I like to remind people to think about, you know, for example, maybe. You know, every morning you go for a swim or a run or a bike ride and you track how you do and you keep it, you keep track of it on an app and you like to look back and see if you're improving. Maybe you're getting faster or slower. What's going on. You know, that's something you do every day. Imagine if you had the ability to share that with scientists. Imagine if you felt this sense of community so deep that you were interested in sharing things like that to better help understand your health, the community's health, what happens when you age, how things change across time. That's where I think we need to get as a society when it comes to human research. 

Karie Dozer [00:13:15] OK, that brings me to two questions. One is about aging. And aging isn't a disease or a disorder, but it happens to everybody. Does this consistent collection of information and touch with patients make figuring out aging easier? Because I think you'd have to agree that there's not a person out there who thinks that aging is great and they'd like to do more of it. It's the one thing that we'd all like to do a better job of. 

Dr. Matthew Huentelman  [00:13:43] Yeah, I think that's a fair statement, but without a doubt. Following people across time is how we're going to better understand aging. I mean, I look back and I wish that I had been tracking certain things about myself across time because I would know so much more about myself. And that is going to be critical to how we understand aging. And I'm a real I'm very interested in the aging body and the aging brain and how we can age more gracefully to avoid Age-Related diseases. So the idea here is that there's a way to do precision medicine focused on aging. So we talk a lot about precision medicine, but that oftentimes means we're treating a sick patient. What if we were doing precision aging or we're focused on recommending certain approaches to the aging process to keep you healthy longer? 

Karie Dozer [00:14:35] But would we listen before age 45 or 50 when we start to realize it's actually happening to us? 

Dr. Matthew Huentelman  [00:14:41] Right. And I think that is one of the battles we have to fight with the with the current way that we get our health care. You know, I know I'm heading in for a wellness visit soon. I know exactly what they're going to do. You know, I'm 45. But I and I know they're not going to test my brain, right? I'm in my mid 40s, I should start understanding how my brain is doing. Not so much that I'm worried about it for tomorrow, but I want to have this baseline. I want to have this understanding of how I'm doing now so I can start to worry about it when it might matter, you know, 15, 20 years down the road. So I think we have a little bit of this push and pull where. Some of this has to get incorporated into our medical care as well, but we need to demonstrate the importance of following how your brain works across time to the medical profession. We need to show this is helpful. And one of the ways to do that is by following a big group of people across time and demonstrating that it's important 

Karie Dozer [00:15:45] for younger people. And this is a generalization. But younger people are more accustomed to being tracked, right. Because they're more likely to have a cell phone or in an Apple Watch or as some sort of fitness device. They're tracked on a number of platforms. Does that give you hope that the future holds more information and more answers? Because the older you are, the less likely you are to have ever given that information, wittingly or unwittingly? 

Dr. Matthew Huentelman  [00:16:09] It is such a great point. And we oftentimes think about this, you know, in our laboratory discussions, we think this is just going to get better and better with time because of that comfort level. Now, I'm not necessarily arguing that's a good thing. I think we all need to balance that comfort with sharing all that we do versus not sharing. So. I think there's an appropriate happy medium there, but I do think it's going to get easier and easier with each generation because of that comfort level with sharing. 

Karie Dozer [00:16:43] What's your ultimate goal with your mobile TGen laboratories that this becomes something that people in Phoenix and in Greater Arizona are familiar with. They know the site of and they're willing to let you roll up and share and that you just sort of become part of the part of the community. 

Dr. Matthew Huentelman  [00:17:02] That that would be amazing. We you know, I want everyone out there to realize, regardless if they're healthy or sick, they can help science. They're valuable to science. And I want to prove it to them by being a part of their community, by not just taking, but also giving, so trying to provide some information back, trying to provide some advice, some expert opinions, but just being part of that of their community, whatever that means. And we know it's going to be difficult. We know it's going to be different for each community. But I do believe we need to work towards this because this is how we better understand just all this massive variation that's in the human race and how we have better health outcomes for everyone. 

Karie Dozer [00:17:55] I hope you have a really successful tour. Will there be a T-shirt? 

Dr. Matthew Huentelman  [00:17:59] Absolutely. T-shirt, T-shirt cannons. I don't know. You know, we need to get people excited for sure. 

Karie Dozer [00:18:04] OK, well, concerts are back, so the tour is back. Matt Huentelman, thanks for your time today. 

Dr. Matthew Huentelman  [00:18:09] Thanks, Karie. 

Karie Dozer [00:18:10] To learn more about MindCrowd, visit mindcrowd.org. TGen, an affiliate of City of Hope, is an Arizona based nonprofit medical research institute dedicated to conducting groundbreaking research with life changing results. You can find more of these podcasts at tgen.org/tgentalks or on Apple podcasts. For TGen Talks, I'm Karie Dozer.