In this episode, Aaron Carroll talks with Dr. Peter Embi about the All IN for Health program, which promotes health resources and opportunities to participate in research and clinical studies. You can join the All IN volunteer registry by filling out a profile on All in For Health.

This episode of the Healthcare Triage podcast is sponsored by Indiana University School of Medicine whose mission is to advance health in the state of Indiana and beyond by promoting innovation and excellence in education, research and patient care.

IU School of Medicine is leading Indiana University's first grand challenge, the Precision Health Initiative, with bold goals to cure multiple myeloma, triple negative breast cancer and childhood sarcoma and prevent type 2 diabetes and Alzheimer's disease.

Aaron Carroll: This Healthcare Triage Podcast is sponsored by Indiana University School of Medicine, whose mission is to advance health in the state of Indiana and beyond, by promoting innovation and excellence in education, research and patient care.

IU School of Medicine is leading Indiana University's first Grand Challenge, the Precision Health Initiative with bold goals to cure multiple myeloma, triple negative breast cancer and childhood sarcoma and prevent Type 2 diabetes and Alzheimer's disease.

Our guest today, again, is Peter Embi. He's the President of the Regenstrief Institute, and he's going to be here today to talk to us about All In and I can't wait to hear what that's about. But before we even do that, Peter, if you could just give our listeners a reminder of what the Regenstrief Institute is, considering you're the president of it, and you should be best able to answer that.

Peter Embi: Sure. Happy happy to do it and it's great to be with you again. So the Regenstrief Institute is an applied research institute in Indianapolis, Indiana, that's a affiliated with and a support organization to Indiana University and the Indiana University School of Medicine. We've been around for about 50 years and we do research and innovation in the areas of biomedical informatics, health services research, and aging research with the intent of really improving health and healthcare through innovation, primarily in the areas I've described that relate to how we better use technology, data, information science, and improve the practice of health care in order to improve the lives of people everywhere.

Aaron Carroll: So what is All In?

Peter Embi: Yeah, so All In is an initiative that started with the Indiana Clinical and Translational Science Institute or CTSI, which has the goal of really engaging with the residents of Indiana to improve their understanding of health issues, so health literacy we often call it, to better understand the role of research in improving our ability to take care of people, to make discoveries, to improve health care and to give people the opportunity, if they volunteer, to be a part of research studies and so we do that in a number of different ways through this initiative called All In.

Aaron Carroll: Is there something that it's an issue? Do people not have a good sense of health and what's going on and how to be involved?

Peter Embi: I mean, certainly there's some people who have a very good understanding of health issues and certainly their own health, but there's a lot of folks who may not understand a lot about health and also the rapidly developing science behind what we think of as modern day medicine and healthcare. And so as part of the Indiana CTSI, we work across the state to improve how we can take better care of people through research, through discovery and part of that involves, we believe very strongly, engaging with the populace, engaging with people and making sure that they are not just... We do not want to think of people who participate in research as so-called research subjects. That's not really the goal. The goal is to have participants. The goal is to have people who volunteer, who understand what it is that we are studying and then volunteer to be a part of those research studies and there are several reasons for that.

Number one, the more engagement we have, the science that results from that will actually be applicable to our population, right? So the more people from Indiana, from our communities that represent the diverse communities here across the state, the more of them that are engaged, the more likely the results are going to benefit them in their communities. And we think that generally speaking, the impact of that is not only going to be felt by the kinds of therapies and resources that we bring to help people get better when they get sick, but also just generally having a better understanding of health issues will probably result in a healthier population and that's an area where Indiana traditionally hasn't done very well. So we want to improve that.

Aaron Carroll: So how do you get people more involved? How do you get them linked in?

Peter Embi: So there's a number of different ways we've gone about this. One is that we've got these days, of course websites and apps and other solutions where people can engage. So for instance, in the Allinforhealth.info website, people can go and read about health issues. They can learn more about the kinds of studies that are going on across our universities and our academic health centers across the state. They can volunteer to participate in those studies. So, we have a volunteer registry where at this point, as of last month, we have over 30,000 Hoosiers that have signed up to be a part of the registry and that's pretty substantial.

In addition to that, we broadcast information in different ways. Sometimes we do things like this with podcasts. Sometimes we do advertising and other kinds of activities, all with the goal of trying to get people in our state to understand the important medical research that's happening, understand the kinds of discoveries that are being made to help them in their families and then giving them opportunities to connect.

Aaron Carroll: So what happens when someone registers? What's the next step?

Peter Embi: Yeah, so when they register, they will get confirmation that they've registered and then they're, depending on what they've agreed to, they'll start to get information about health issues. So, we send out periodically, newsletters and other kinds of information from a lot of the science that's being done here across our different university partners at Indiana University and Purdue and Notre Dame, and otherwise across our health system partners. So they'll get that information and then in addition, they'll get notified and have the opportunity to see information about research studies as well, when they become available and that can happen again in various ways that we can reach out to people. So, a good example recently was giving people the opportunity to sign up for studies around COVID, as an example.

Aaron Carroll: Can you tell me a little bit about that?

Peter Embi: Yeah, sure. So this TACTIC study a tracking asymptomatic COVID-19 through Indianapolis communities. We wanted to recruit individuals and ask them to participate and so we sent out an announcement about that. That was on April 23rd, and we in 20 minutes, met our enrollment targets. We had a wonderful group of volunteers who were sitting there waiting for these messages to come through and they volunteered to participate in that. And we also have had other campaigns.

So recently of course, with the studies to look at vaccines as an example or therapies, there are other examples where we can reach out to people and invite them to participate. So those are the kinds of things that we can do and COVID certainly has been a very recent example of that.

Aaron Carroll: So how do you actually reach out? Is it emails? Is it texts? Is it voice calls? How does it all work?

Peter Embi: It's largely emails. So we've been doing it that way primarily and it's really based on the information that people share with us and how they indicate that they want us to reach them. But yes, we've primarily reached out through that. We also will put information out in the media, so people can go also to the website and when they hear about an opportunity in the news or what have you, then they can also go if they haven't signed up. But yeah, typically we will send them emails.

Aaron Carroll: How do you make sure you have a good representation of people in Indiana. Do you go out and actually try to recruit certain populations?

Peter Embi: That's a great question. We do and it's not easy. It certainly takes a lot of effort, but one of the things that we do broadly across the Indiana CTSI is we really try to connect with different communities and a lot of that involves the work that some of my colleagues like Doctor Sarah Wiehe and others do, where they go out and engage with communities. Because as you might imagine, there's different venues that people listen to, different media outlets or other things. So we try to go to communities to try to get that breadth and partner with the communities.

The idea here, and it's very important, is that we want to make sure that everybody understands what it is that they're signing up for and that they see this as part of how they can give back. I've participated in research studies myself. When we do that, what we're doing is we are volunteering. We are saying, "Yes, I recognize that the people doing this study have ethical oversight, and they're doing a study that's safe and effective and I trust our system to do that." But then I'm volunteering to say, "You can perform a study including me." And that's a really special thing. It's something that is really kind of, I see it as a civic duty that we can do, but it has to be voluntary and people have to understand, we have this concept of informed consent. People have to be informed. They have to understand what they're signing up for and part of the process is making them aware of what these opportunities are. That gets to that issue of what we call literacy, really understanding. And then if they're interested, making sure that they really understand, what is this particular study involves.

Some studies are quite straightforward. Some of them include filling out a survey. Some of them include simple blood draw and others include being on a therapy or having multiple steps occur throughout the course of the study, so that has to be explained. People have to understand that and then ultimately they have to consent. They have to say, "Yes, I'm okay with that," and then they can proceed.

So we do all of these things with very important ethical oversight, as with all of the studies that are done. But the first step is making sure that we do reach out to all of the relevant communities because again, we want that representation. We want to make sure that that happens so that the... So for instance, I'm Hispanic. I want to make sure that studies include people who are Hispanic. We want to make sure studies include people that are African-American or from other communities, because otherwise, if we only do studies in a certain group that doesn't represent the whole population, then we can't necessarily be sure that the results are going to apply to the whole population and that could lead to individuals not being best cared for.

It's also important that we are fair and equitable when we do that. So that people understand that again, everything that they are signing up for is very clear and it's the whole story because there certainly have been issues in our history as humans, where we have not done that quite as well as we should have. So we never want to fall into those traps.

Aaron Carroll: How long has this been going on?

Peter Embi: All In For Health has been going on for a few years now. We started it a little over five years ago and it's been an effort that has been growing slowly, but we've really seen it ramp up, especially in the last couple of years.

And again, the effort to really ensure that people understand health issues well and understand research well, has been going on for some time in various ways. But the deliberate work of All In For Health has really taken off I would say in the last two to three years.

Aaron Carroll: Can you notice a difference? I mean, does it make recruitment for some studies easier than it otherwise would be?

Peter Embi: Yeah, we definitely have seen that. I think there's no question that there have been a number of studies and that example I just gave about the rapid recruitment of individuals to that TACTIC study is a great example. There's no way we would have been able to reach out, identify and enroll everybody we needed to in a day, if it wasn't for a resource like this.

Having said that, I think there's still a lot of opportunity to grow it further. As I said, we now have over 30,000 people that have signed up, but that's of course only a small fraction of our whole population. And we set a goal actually, of exceeding 100,000 by 2022. My hope is that we far surpass that, but that's important to your other point of making sure that we have good representation, because we want to make sure that again, we are doing studies that really are representative of the population.

Aaron Carroll: Besides study recruitment, do you think there are other benefits to people joining up?

Peter Embi: Yeah, I think there's a number of different benefits. Again, one of the things we focus on is getting more information out. So, in addition to being able to participate in a study yourself and contribute in that way, being able to learn about the results of those studies or other studies that are happening, being able to get more targeted information, can be very helpful to you and your family and we want to be able to share that information with communities.

I think in addition to that, we hope that as this grows, we have even more engagement where we could see other benefits for the community in terms of generally people having a better understanding of the intersection point of health, health care and research, so that people generally have a better understanding of how do we even come up with these discoveries? How do we develop a new therapies and how do we get those out into practice?

I think the more that all of us understand the scientific process, the better our whole community is and our whole society is because it starts to take, what for some people might be a mysterious process, and make it less mysterious, which adds to trust in the overall health system and I think that additional trust in the health system is terribly important.

Aaron Carroll: Is this something that's unique to Indiana, or are there efforts like this going on all over the place?

Peter Embi: The way we're going about this is unique, I would say. Doing a sort of statewide effort, like this is very unusual, although there are examples across the country of a lot of organizations that have developed parts of what we have in All In, like volunteer registries, where people can sign up and say they'd like to hear about research, other efforts to reach out and engage the community. So there certainly are a lot of communities doing this kind of thing.

I think perhaps the unique element of what we're doing, at least in large part, is that we span the entire state and that makes it different.

Aaron Carroll: Do you find that people are enrolling from all over the state?

Peter Embi: Yes, obviously we do have a larger proportion of people, more in the larger population centers, especially around Indianapolis, not surprisingly where we have a large portion of our population, but we do in fact, have people enrolling from all over the state. We want to increase the numbers from across the state, as much as we can, again to get that representation, not only of the racial and ethnic demographics, but also the populations across the urban and rural areas and across the age spectrum.

So we're seeing people enroll from all over the state, but I think the more we can get from a true representative sample, the better we're going to be and right now the preponderance is still in the big population centers like Indianapolis.

Aaron Carroll: How do people go about getting involved? How do they sign up?

Peter Embi: So, the easiest way to do it is to go to allinforhealth.info and go ahead and sign up through the website. You can also find a link if you go to the Indiana CTSI website. So that's the easiest way to do it.

In addition to that, you can keep an eye out for other times we have done campaigns with flyers and things like that, but that's really the best way is to go to the website and sign up.

Aaron Carroll: There's an app if I remember correctly?

Peter Embi: Yeah. So we actually did partner with and are partnering with our colleagues at a company called LifeOmic, the space right here in Indianapolis, to develop an app where people can also sign in. So it's the LIFE Extend app that our colleagues at LifeOmic have created and that was great. We did that last summer and that continues to be another way for people to engage. They can get a lot of good health information through that app. They can use it to track certain things if they want to themselves, in terms of what they're eating, how much exercise they're getting. There's a lot of benefits to that app. And then within that, you can also go ahead and sign up for All In For Health. So that's another way to do it.

Aaron Carroll: Can you give us some examples of other studies which have been aided this way?

Peter Embi: So another good example is a study where, so one of the big that we've been engaged in is a so-called Precision Health Study, where we want to enroll people to be able to learn more about, if they volunteer to give us not only their healthcare data for research, which we securely maintain and can analyze, but then combine that with their genetic information, we can learn a lot more about what is the genetic basis for certain diseases like diabetes or liver disease, or what have you.

So, one of the studies that we've reached out to for this is a study where our Precision Health Study, where we can actually enroll people. That's one where the activity really is to sign a document that says, you will volunteer your data and you will volunteer a blood specimen. We do a blood draw and then we've got your blood to be able to analyze in our bio bank, as we call it. And then researchers can come along and they can, with your consent, use your blood sample data, use the genetic information that we can get from that and use your healthcare data to be able to do studies to better understand what is the cause of disease? Why does that differ among different people? How do different people have different levels of risk for developing certain diseases, different outcomes? How are they going to respond differently to therapies?

So that's another good example of a study where we've used this resource to engage volunteers.

Aaron Carroll: How has this all involved Regenstrief Institute?

Peter Embi: So the Regenstrief Institute is involved in a couple of different ways. We've been involved in helping to develop and stand up some of the underlying technology that helps us function. We also are what we call data stewards. We manage the data assets for a lot of these studies, including the health data assets that then get used.

So when someone gives their consent to allow their medical information to be used for a research study, we at the Regenstrief Institute manage that and we have been what is called the honest broker of these data. So we are the go-between to say, "Okay, somebody gave their consent. Let's verify that that's the case and that this is a legitimate approved study." And so now we can give those data to the researcher to allow them to use it and help them with the analysis if we need to.

So we really live at that intersection of managing and leveraging the data for these kinds of research, and then working with our colleagues across the universities and health systems, to help them do the research studies that they're conducting.

Aaron Carroll: So how do researchers get involved if they wanted to make use of this big network?

Peter Embi: We have ways through the Indiana CTSI, for researchers to come and connect with All In For Health. They can use our databases to identify people who have said they are willing to be contacted for studies and then they can reach out through our network. They can basically work with our All In For Health team to reach out to individuals and invite them to be part of the studies.

When we know that certain people have told us that they have, for instance, certain characteristics, whether it's depending on the study, it could be their age or it could be their exposures, or it could be a particular medical history that they have. Maybe they have diabetes. Maybe they have hypertension. Maybe they have some other condition that someone wants to study, then we can make those connections and work with researchers to identify people and give them the opportunity to participate if they'd like.

Aaron Carroll: I imagine however the work, when we're talking about getting people to be involved in things like this, we're looking for all people; healthy people, people with illnesses, everybody.

Peter Embi: That's right and that's a very important point. It's often the case and again, the recent COVID example is a good one. We often need people who are so-called healthy volunteers, to participate in studies. Sometimes another example is, we may be doing a study to actually test the safety of a particular new therapy and oftentimes you want to test that in a healthy population. So, that's right. It's not just people who have a medical illness, although that's very welcome because there's a lot of different medical illnesses that we want to study and we need people with those conditions in order to volunteer. But we also are looking for healthy volunteers in some cases and survey research is another example. There's lots of things like that. So, yes, I think it's really for everyone.

Aaron Carroll: When people join, do they have to fill out information about their health so that we might know what, for instance, conditions they might have or what they might be interested in participating in?

Peter Embi: Yeah. We invite them to fill out surveys and give us some information about that and that helps us with the matching. Again, a lot of that it's voluntary, but to the extent that people give us that information, it certainly helps us make those matches better.

Aaron Carroll: Does any of this cost money?

Peter Embi: All of it costs money, of course, but not to the individuals. So part of what we do, on behalf of the health systems and the research enterprise for the CTSI, is we support this. So the individuals do not pay for this. They are doing us a service by volunteering to be part of the registry. They're doing us a service by being available to volunteer for the studies and then they get the benefit of participating in these studies. And in fact, depending on the study, and some studies may actually also have some way of even compensating them for their time.

Aaron Carroll: So I'm sure you've received feedback at this point. People find this to be a positive experience? They enjoy it?

Peter Embi: Yeah. We have gotten quite a bit of feedback. I think a lot of people do enjoy it. You know, the fact that when we put out a call for a studies, we get so many people that click to respond and say, they're interested, to me that's the most impressive feedback and the fact that we have more and more people, every time we reach out like this, that sign up and say, "Yes, I'd like to do my part and be a volunteer and help do what I can to help advance knowledge and develop better evidence so we can take better care of, not just me, but my kids and people in the future and my community," that's the best evidence.

But yes, we also, we also do surveys and we make sure that we understand what kind of experiences people are having and do they see this as beneficial?

Aaron Carroll: Are there any downsides to signing up?

Peter Embi: No, there really aren't, to be honest. There's really not a downside. Again, everything is voluntary. People can always withdraw and certainly we keep everybody's information confidential. So there's really not any harm that can come to someone from this to any degree that's even worth considering. I think it's really more just being in the loop to learn more about health, to learn more about research and then have the opportunity to participate.

Aaron Carroll: So why do you think this is so important to do in Indiana?

Peter Embi: I think it's important everywhere, but it's particularly important in Indiana because to be honest, unfortunately, here in Indiana, we rank rather low on a number of different statistics of health. Out of the 50 states, we're often in the low sort of forties in terms of a lot of our health statistics and so it makes it even more important. We want Indiana to be among the top 10 healthiest states, not the bottom 10 healthiest states. We want Indiana residents to be healthier and therefore happier. We want Indiana to be a healthy place for people to live so that more people stay here and want to move here and have happy, successful lives.

In order to do that, we really need to have good health care and we need to have good health in the community and I think that makes it really critical that we dedicate ourselves to making sure people understand how they can live healthier lives and giving them the opportunity to help us better understand how we can get them healthier, which of course includes research. And then through that, we learn how to keep people and communities in the public healthier. So I think that's a big reason why it's so important to do that here in Indiana.

Aaron Carroll: So Peter, one more time, where do people go if they want to sign up?

Peter Embi: Yeah. So they can go to allinforhealth.info, all one word, allinforhealth.info and there they can read more information about All In For Health. They can sign up to be a volunteer and they can learn a lot more about different health conditions and the like.

They can also go to the Indiana CTSI website and learn more about the Indiana CTSI and they can Google that but the easiest thing is just go to allinforhealth.info and learn more about the initiative and sign up. That would be great. We hope people do that.

Aaron Carroll: Well, thank you very much, Peter. It's been really interesting and I hope that more and more people sign up.

Peter Embi: Great. Thank you, Aaron. Great talking with you.

Aaron Carroll: This Healthcare Triage Podcast is sponsored by Indiana University School of Medicine, whose mission is to advance health in the state of Indiana and beyond by promoting innovation and excellence in education, research and patient care. IU School of Medicine is leading Indiana University's first Grand Challenge, the Precision Health Initiative with bold goals to cure multiple myeloma, triple negative breast cancer and childhood sarcoma and prevent Type 2 diabetes and Alzheimer's disease.

Again, this Healthcare Triage Podcast was sponsored by Indiana University School of Medicine, whose mission is to advance health in the state of Indiana and beyond, by promoting innovation and excellence in education, research and patient care.