All of Us: Improving Health Care Through Research

Show Notes

Eric Dishman, Chief Innovation Officer at All of Us, explains why the organization is on a mission to collect and study health data from a million people or more, and how will this data help improve health care for all of us.

Episode Transcript

Sue Peschin:

Hi everyone. And welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m Sue Peschin, President and CEO of the Alliance for Aging Research. Today, I’m thrilled to be talking with Eric Dishman, the All of Us Program’s Chief Innovation Officer. Eric, thank you so much for joining us today.

Eric Dishman:

Well, thanks. I’m so thrilled to be here with you.

Sue Peschin:

Great. Well, to start off, I would like our listeners to learn a little bit about you. And then, please, let us know what they should know about the All of Us Research Program.

Eric Dishman:

Oh gosh. Well, I’m a big fan of the Alliance and have done partnerships with the Alliance in the past. I mean, at the core, I’m really an aging researcher. And a good three decades of my career, I’ve really been focused on how do we accelerate research and innovation? How do we use technology to help older people age in place from wherever they choose, especially how can they get health from home?

Eric Dishman:

I’m a social scientist by background. I’m a family caregiver by experience. I was 16 when I became a caregiver for my grandmother with Alzheimer’s. I grew up in a very close relationship with my grandparents and I think that’s what drove me to always be interested in how can I use my existence on the planet to help older people have choices even maybe as their health is challenging them or other problems are occurring later in life.

Eric Dishman:

So, I mean, that’s who I am at core. I came to the National Institutes of Health almost four years ago because I had an opportunity… The other aspect of me that’s germane to this conversation is, at age 19, I was diagnosed with an advanced form of kidney cancer and told that I would have nine months to live. I’m happy to say that I’m 52 today and I’m cancer free now for about eight or nine years.

Eric Dishman:

For 23 years, I was treated with 57 rounds of chemo. And most of the patients that I do cancer advocacy back then, as well as now, we’re older adults. Because it’s rare that somebody at 19 is getting a cancer and rare that somebody at 19 is going to live with it for that long. So, I’ve literally helped thousands of cancer patients go through their experiences and kidney patients go through their experiences. Mine was kidney cancer.

Eric Dishman:

And so, I bring caregiver sensibilities to this but also patient advocacy sensibilities, especially for older people. The ironic thing is it was a whole genome sequence, which we’ll talk a little bit about in the context of the All of Us Research Program that helped to save my life and come up with a cancer treatment regimen personalized to me that ended up making me cancer free after 23 years of failed treatment.

Eric Dishman:

So, the opportunity for me to go to the National Institutes of Health and figure out how can the… What we call precision medicine or some people call it personalized medicine, how to accelerate the health research so that all of us could have that access that I did. That’s really been the transition for me. And that in fact is the mission of the All of Us Research Program, accelerate health research and medical breakthroughs that come from that research to enable the individual prevention treatment and care for all of us.

Sue Peschin:

Eric, that was so interesting. I did not know about your personal experience with cancer. So, I really appreciate you sharing that with our audience and also the experience with your grandparents. I feel like so many people who are in the aging space had close relationships with older relatives. And I love hearing your story. You mentioned the COVID-19 pandemic of course, which is top of mind. And I wanted to know how is All of Us addressing the COVID-19 pandemic.

Eric Dishman:

Let me back up and help you understand what All of Us is. The goal is to enroll a million or more people nationwide from all parts of the country and all walks of life to share their different types of health information over many, many, many years. Part of what we’re setting up is an unprecedented study to really understand how is it that environment and biology… Environment in the sense of your social environment, how do those things come together to produce health or the absence of health for people?

Eric Dishman:

And if you take an example like Alzheimer’s, it’s likely that there’s all these multiple factors that lead one person to get Alzheimer’s and another person not or one person to go very slowly and another person’s to go very quickly. And we don’t really understand today precisely how to treat an individual with Alzheimer’s because we haven’t had research that’s looked at people’s lives in large numbers and a million or more people is large numbers.

Eric Dishman:

We haven’t had research that’s collected a wide range of data from clinical data, like your electronic health record to your whole genome sequence, which is really unprecedented at the scale in which we’re going to be doing that. And then to go look at how do diseases unfold and then be able to look back in time at the record and say, “What were the factors that came together to lead this person to get diabetes and this person not?”

Eric Dishman:

And so, that’s the essence. This is what is called a cohort study. Participants will get information back. Unlike most scientific research, we really insisted about participant engagement. We have participants who are part of our governance of all parts of the All of Us Research Program. And the other aspect of our program is it’s not just a few select scientists who will get to use this data, in fact, we’re working to eventually even make it so that citizen scientists can in the proper ways get access to the data to do science.

Eric Dishman:

We want to make sure participants can get information and data back if they want it about themselves. And also that scientists can do that. And this is particularly true in the case of COVID, which you just mentioned. Like the rest of the National Institutes of Health as COVID hit, we had to deal with just the sudden, how do we deal with this ourselves, our own employees? How do we make them safe? How do we set everything up so everybody can work from home?

Eric Dishman:

We also wanted to make sure that as one of the largest cohorts in the world and certainly the most diverse, that we aim the power of our data collection at COVID so that we could provide some research insights. And there’s really three areas where we’re doing that. The first is an antibody testing study. If you’ve had the disease, you form antibodies or eventually, when there’s a vaccine that helps you to form antibodies.

Eric Dishman:

So, our antibody study is to really try to help figure out this critical piece of the larger picture of how did this really start? When did it exactly start in the United States? Where did it cross over? And then how did it spread? The second is a survey called COPE. And it’s really focused in not just those who get sick but all of us who are experiencing a very different life because of COVID.

Eric Dishman:

The survey is really looking at people’s mental health and experiences each month as they’re going through COVID. And then the third rail of area is really electronic health records. It’s really important for COVID researchers to understand clinically what’s going on with a participant. So, in our case, we’ve been trying to help our partners who share the electronic health record data if you consent to do that as a participant to accelerate that.

Eric Dishman:

Right now, we have to ask research questions so quickly about COVID that we need to be up to date on what’s happening in somebody’s electronic health record so you can understand what were the consequences of them taking that particular drug or treatment to recover from COVID. And at the same time, who are people at high risk that might be in exposure environments but they’re not getting COVID. Why is that?

Eric Dishman:

So, with those three things, the antibody testing, the COPE survey, and collecting the EHR data at a faster pace, we hope to have some historic impact and help people understand COVID. And because of the diversity of our population is so inclusive of those who are African Americans and others who are getting high rates, Hispanics who are getting higher rates, hopefully we’ll be able to make inroads and trying to understand why are those populations hit so much more than others.

Sue Peschin:

Oh my gosh. I love this. I didn’t know that you were doing all of that on COVID and I’m sure everybody who’s listening also didn’t know. Before we move on and I want to talk about this diversity piece, I just want to ask, are you still looking for more participants on those studies? Can people still get involved if they’re interested?

Eric Dishman:

Sure. I mean, the All of Us Research Program is ongoing all of the time and we encourage people to go to joinallofus.org and learn about it, right? It’s not just a COVID study. It’s not just a genetic study. It’s a lifelong aging study. It really is. To understand not just COVID but all of these conditions and diseases that we have a one size fits all medicine approach today.

Eric Dishman:

As somebody that went through 70 or 57 rounds of chemotherapy, I can tell you, they didn’t know how to adjust the dosages for a young person like me because most of the dosages have been designed for people in their 50s and 60s. So, here’s a case in cancer, where we had studied older people but we hadn’t studied younger people. The same thing applies here, right? We don’t really understand how to pinpoint treatment to an older person who has had no history of heart disease and suddenly gets heart disease. It’s like what’s caused that, right?

Eric Dishman:

And so, this kind of pinpointing or this kind of personalization or precision medicine that we’re really trying to support here, it’s important for COVID, it’s important for cancer, it’s important for Alzheimer’s, all the age-related conditions, our public resource that you are contributing to will help us understand basically all major diseases in ways that we’ve never been able to do before and hopefully, help then come up with cures or treatments that are much more precise and designed for you, your age, your metabolism, your genetics, as opposed to the often Russian roulette or trial and error that we’re often under today of saying, “Let’s try this and see if it works. Let’s try this and see if it works,” meanwhile, collecting a bunch of side effects that can impact you. So, again, go to joinallofus.org. And by just by joining, your data will already start to make an impact on COVID research but also all the other conditions that I just mentioned as well.

Sue Peschin:

Great. You mentioned a couple of times about diversity and how All of Us is one of the most diverse studies ongoing out there. And historically, research studies have really lacked racial and ethnic diversity. So, I wanted to hear from you how the All of Us Program is different and how you’re working to increase diversity in research overall.

Eric Dishman:

It’s interesting. I mean, if you look back at history in the United States and even the National Institutes of Health, it wasn’t that many decades ago that we did pretty awful things to some populations, African Americans, American Indian, Alaska natives and many others in the name of research. And thank gosh, there are no international protections in place to protect what’s called human subjects as a result of those atrocities.

Eric Dishman:

If we really want… And we’ve had to have direct and hard conversations with communities that have been hurt by research in the past to build the trust with them. And we have a network of hundreds of community partners across the country who are key for us, both listening to all communities but also giving… And some of those community partners are age-focused and age-related as well by the way. 80% of our participants who have signed up are those who are what we call UBR. They’re underrepresented in biomedical research.

Eric Dishman:

And 50% of our participants are underrepresented based on racial and ethnic lines. We’ve really hurt populations by not understanding all populations because health can be different across racial and ethnic lines. There’s over 353,000 people who have consented as of today on our path towards a million. And 271,000 of those have already completed the first full protocol. And we’re still setting at those unprecedented diversity numbers of 80% underrepresented and 50% underrepresented based on racial and ethnic minorities.

Eric Dishman:

That’s one of the reasons our project is uniquely valuable for COVID but again, for cancer and all these other conditions. We simply don’t have the data because we haven’t included racial and ethnic minorities and they have had reasons to be suspicious about what research might do to them. And so, building that trust has been one of the key value propositions of the All of Us Research Program.

Eric Dishman:

If we can create the most diverse cohort in history and tee up the data so that scientists on day one can start their research, we already have something that’s so much larger than they could ever do. This is the kind of public resource that we built. And that diversity is just simply unprecedented globally. And many, many scientists are very eager to get their hands on the data because they’ve never been able to study diverse groups at any statistical power before.

Sue Peschin:

That’s fantastic. And it also sounds like you’re much more equipped to be looking at cross tabbing of groups. Because one thing that I know so many advocacy organizations have been frustrated about with the pandemic and just in their particular disease areas of focus is, is it possible to not just look at older people with a particular condition or African Americans with particular condition but maybe older African-Americans or older female African Americans? So, the ability to do that seems lost in a lot of other types of programs. And this one sounds like you guys are getting past that and really painting a full picture of what something looks like in the real world.

Eric Dishman:

That’s right. And I mean, what you just pointed out, it’s like you could be African-Americans of a certain age, 70 and above and the West Coast versus the East Coast or a rural area versus an urban area. And this is what I mean, we guess that all of these different factors may play both at a population health level and an individual but we’ve never had the data and the statistical power to really understand that.

Eric Dishman:

And that’s why getting people of all ages to go to joinallofus.org and join is important. When people will ask me why did people join? And I’m like, “Many of them want to learn about themselves.” In an unprecedented way, we’re giving data back to participants who want it. It takes us some time sometimes to get all that data up and the communications and the education in place so they would know what to do with it. But that’s a real change of the model.

Eric Dishman:

I personally had been in more than a dozen clinical trials and never once got any of the knowledge or data back. And I didn’t do it for that reason. You do it to give back, which is the number one reason why people tell us that they join All of Us. But in this case, they could learn something about themselves or their family’s health for the future that’s important. And so many people tell us they want to give back but once they understand, it’s like, “Oh, this might impact me in my lifetime. I’m really keen to sign up and go do this.”

Sue Peschin:

Okay. Well, so, you already gave me a couple of reasons for why people should consider joining the All of Us Program but I want to hear a couple of more. So, you talked about the self-interest to learn about yourself, to share with your family, maybe to give back, what are some other reasons and then what does becoming a participant involve?

Eric Dishman:

Yeah. I mean, what we hear especially lately that the news of the diversity of our program has gotten out, it’s really made communities who have been underrepresented to start to stand up and say, “Wait a minute, join so that we can have research about us.” And hence the name All of Us, not just some of us. Most of the studies that we’ve used to create today’s generation of medicine, were mostly studies of white men and eventually white women in pretty healthy circumstances.

Eric Dishman:

So, fleshing out the real America and all parts of it is a key part of the research community. So, a lot of communities now are like, “I want my community to be represented in research and whether it’s COVID or whether it’s cancer or whether it’s cognitive decline,” that’s a big part of it. As people have started to understand that this really is a different scientific study, many of them I’ve gotten more excited about getting their information.

Eric Dishman:

We’re fast moving towards starting to be able to share back people’s genetic information. And when we surveyed a wide range of groups before we started the program, two of the areas that people really wanted information back were about their environmental exposures, which we have the blood and urine but we haven’t run those yet. Eventually, we’ll give people back information about their environmental exposures. And for those that understood it, they wanted information back about their genetics.

Eric Dishman:

Sometimes just stuff like traits and the ancestry and other times, health impacts that are going to occur. And again, if this is a lifelong study, you’ll start to see that you contributed to research and then a decade later, there were some fundamental new cures and they may come back and actually help you. I mean, that’s one of the powers of being part of the longitudinal study. Most studies, you have no hope of it actually impacting your own health but in this case, there could be near-term or long-term things that would actually impact your own health and certainly the health of your family.

Eric Dishman:

The basic process is sometimes it can occur at an in-person event though, right now, of course, all of that’s being held because of COVID. People can go to joinallofus.org. You walk through a consent process. We’re very clear with people about, this is what’s going to happen to your data. This is how we protect it. These are the things that will be done and won’t be done. And we want people to read that consent really carefully. Then there are up to six surveys to start. You can do them over a long period of time. You can do them all at once.

Eric Dishman:

Some participants maybe ask then to go to one of our partner sites. We have hundreds of sites around the country. Again, most of them closed right now due to COVID but eventually, we’ll be able to take physical measurements again. So, it’s like height, weight, neck, circumference. It’s not a physical. You keep your clothes on. It just takes 10 minutes or so. And it’s just some simple measurements to understand on the day that you joined the study or at the time in which you came in, what was it? And then blood and urine samples like you would typically do for a doctor’s appointment.

Eric Dishman:

And then there’ll be other opportunities in the future, right? For people that have Fitbits for example, they’re able to share their step count data with us, which when you add that to their electronic health record data and see health overtime, may give us some really big insights. And then, as a participant, you’ll get over time results back and information and you’ll be invited each time, “Hey, we have genetic information ready for you now. Do you want to know the health-related outcomes?”

Eric Dishman:

Because you might not. And many people may decide not. Do you want your ancestry information? Do you want your trait information? Do you want your electronic health record data back? Because you’ve never actually had it yourself, right? You authorized to do it. And we’ve gone through a lot of work to try to get it in a secure way. Do you want that information back?

Sue Peschin:

It sounds like participants have wide access to the data that you collect on them. But what do you do with the information that you collect?

Eric Dishman:

So, it is important to help everybody understand it’s de-identified. So, the researchers are not getting your name or your address. And we go through a lot of complex technology and human testing to make sure that the person can’t be identified. All of our researchers have to take training and sign a commitment that they won’t try to re-identify people. And we built some of the most secure systems on the planet.

Eric Dishman:

There’s no such thing as a breach-free system. And if somebody tells you that, they’re lying. But we’ve learned from the credit card companies, we’ve learned from the government that has to secure things, what are the best ways that we can actually secure that and make sure that that data is never released. Today, most of our data, you can go to researchallofus.org and click on something called the data browser. And that’s just a public view of aggregate data that’ll tell you about what you and your other participants have done, right?

Eric Dishman:

So, you’ll see the things like, wow, there’s 277,000 blood and urine samples in the biobank right now. And you can do some high level characterization. How many women have signed up? How many men have signed up? We’ve just launched the beta version of what we call the Researcher Workbench. And this is where approved researchers will get access to deeper levels of data. So, not just that aggregate data.

Eric Dishman:

And then, that information overtime, soon, we’ll start genotyping and whole genome sequencing everybody. That will be in the data set available to researchers over time. And again, we’re working on ways to return that in an appropriate way. For example, we don’t want to just send you your genetic information and say, “Good luck,” it’s can be really hard to understand. We have a genetic counseling resource that we built nationally.

Eric Dishman:

So, when we’re ready to start doing this in the coming months, it’s not just that you’ll get this email of some gobbledygook that you don’t understand. We’ve really worked hard to translate it into everyday language that even try to get down to fifth grade reading levels. And at the same time, there’ll be a genetic counseling resource. So, you can decide, “Do I want to get health-related information back?” And if I do, you can have access to a genetic counselor to help you make sense of it. And even to share some of that data with your doctor so they could make sense of it.

Eric Dishman:

So, I mean, that’s what happens with the data. The bio samples are stored in these large freezers with robots that have Fort Knox security around them at the Mayo Clinic and on multiple sites because you wouldn’t want electricity to go down and wipe out all the bio samples. And the data is stored in a secure commercial cloud system that the banks and others use with only access for those who can get it. As the founder of the program and now as Chief Innovation Officer, I couldn’t get access to an individual’s level data, right? Only about five people can actually do that just to make sure the systems are working well.

Sue Peschin:

Wow. That’s great to know. I mean, I think it’s important to run all that out so people understand this is really secure. We’re not just handing it out. It’s not something where people are going to be able to track back to who you are. And that actually leads me to my next question, which I’ve been curious about for a while. How is the All of Us Program different from the direct to consumer genetic testing companies like 23andMe? Because I’ve read a lot of stories about how the data is sold. And so, tell me a bit about how All of Us is different.

Eric Dishman:

Yeah. I mean, it’s really an apples to oranges comparison or like an apples to tractors comparison. You can tell I’m a farmer. All my references are about fruit. So, when I finish with you, I’ll be out in the fields in a little bit with our farms. I mean, All of Us is a long-term research program of which genetics is just one piece. There’s genetic data, there’s electronic health record data, there’s survey data that people are filling out. There’s already, I’ve mentioned some wearable data that people that are sharing about their exercise.

Eric Dishman:

And that’s because our goal as a public resource is to create the largest, most diverse data set in history and let researchers make discoveries in science on that for free as quickly as possible. The commercial companies are taking individual data and you consent to it when you signed your agreement. Read those agreements really carefully, read our consent really carefully because we slowed down our consent and put videos and things in it to make sure that people really understand what they’re signing up for.

Eric Dishman:

But unlike those commercial companies, we’re not selling people’s data. I mean, it’ll be available for free to qualified researchers who have gone through the training and the commitment to not make that data available. Another thing I’ll point out is our data is all stored in the cloud. You can’t copy it all over to your local PC. So, that they have to come to the data and use it in our secure environment. And they’re not allowed to copy all of that data out, which is very different than a lot of the other things that are happening in the world.

Eric Dishman:

So, I mean, they’re very, very different. Yes. We collect some genetic information and we will offer some ancestry and trait information back to their participants just because many of them expressed interest in it and wanted it. And then we’ll start sharing health-related genetic information with that genetic counselor as I mentioned, when that’s all ready to go and the FDA has approved it. But that’s like one part of a much larger research program that is about an open public data resource that’s not about making money.

Eric Dishman:

Now, I will tell you that we had debate about this and people ask us, “Will companies be able to access your data?” And it’s like, “If they agree to the same rules of the road that the academic or not-for-profit researchers do, then yes.” In our beta right now, it’s only primarily academic researchers who have what’s called an eRA Commons account as we test our systems to make sure that all the security that we put in place is there, that the tools are usable.

Eric Dishman:

But you’ll see us open up that access more and more to different scientific communities and eventually to citizen scientists. Because we really want even an individual who is interested in collecting data and doing science about the conditions that they’re interested in to be able to have some access to that data as well, which again, is unprecedented.

Sue Peschin:

That’s great to hear. And I think it’s going to bring comfort to a lot of people. And now I’m going to pivot and I’m going to ask you a fun question. I wanted to know when you were a kid, what did you imagine growing older would be like?

Eric Dishman:

When I was a young, young kid, I was confused about what growing older would be like because I had two different role models, right? I had my mom’s father who was really my hero. My grandpa Kerr was really my hero and lived to be 99 and didn’t take a medication until the last three months of his life. He was just an ox. He was so healthy and so loving and so much fun. So funny.

Eric Dishman:

When people tell me, “You have Jack Kerr’s bald spot.” I’m like, “I’m proud of it because if I could be affiliated with him in any way, shape or form…” Gosh, sorry, I’m getting a little emotional here, “Then I would be proud.” And on the other end of the continuum, I had my father’s parents, my grandmother, whose mind was great but body was giving out due to rheumatoid arthritis, way too early. And the opposite, my grandmother on the other side, going through Alzheimer’s.

Eric Dishman:

So, I was a little afraid of it as a young kid because I saw how painful it could be but I was a little excited by it because I saw how wonderful it could be. But mostly, I wanted to be the grandpa Kerr version. I wanted to be funny and loving and smart and doing a farm at age 98. And he smoked for a long time. But then at some point said, “This is unhealthy,” and stopped on that day. He just had such strength of will and strength of character. And that’s what I aspire for.

Sue Peschin:

Wow. That’s great. Well, it sounds like you are on your way. And now, so, I want to ask you now, what do you enjoy most about growing older?

Eric Dishman:

What I enjoy about growing older now is different than what a lot of people may have been through given that at age 19, they said, “You have a year to live.” And they kept telling me that for the first 10 years until I have my 23 year cancer odyssey. And so, I stopped listening. So, I’m proud and feel victorious to have reached the age of 52.

Eric Dishman:

And the weird thing is I’m healthier now at age 52. And like my grandpa Kerr, I’ve become passionate for farming and gardening. We’re growing a massive garden and farm to be able to donate to the food bank here, just because of COVID. And I just feel proud of it. Growing old is a gift and I’m incredibly thankful for it.

Sue Peschin:

That’s awesome. All right. Well, Eric, thank you so much for being on our show today. It’s really been a pleasure and just wonderful talking to you. I think you are on your way to following in your grandfather’s footsteps. So, that’s all for this week’s episode. We encourage you to follow the Alliance on Facebook, Twitter, and Instagram.

Sue Peschin:

Visit agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. And please subscribe now and rate us on Apple podcasts, Google podcasts, Spotify, or anywhere else you listen to podcasts. Thanks everybody and have a great day.