Speaker 1
So, welcome to your next chapter. My name is Siobhan Mattingly, and I’m here today with Katrina, who’s awesome. I’m not going to even attempt the last name. I will let you do that.

Speaker 1
So, she is here with all of us research project. I had the great pleasure of meeting with her co-workers at the latest West Hartford Senior Center event, which was awesome. And I was I was absolutely fascinated. I have tons of questions. So let’s get started. Tell us about

Speaker 2
All of Us Research Program. Yeah. So hi, my name is Katrina Yamazaki, and I’m the principal investigator for the All of Us Research Program. And so the All of Us Research Program is an NIH initiative to advance precision medicine. And so this whole program started from President Obama’s precision medicine initiative that really tried to understand how to shift healthcare from a one size fits all model to more of a tailored approach to healthcare, right? So for example, if you’re looking at your neighbors, you understand that there are differences between you and your neighbor and your healthcare should reflect those differences, right? So you want healthcare tailored to you in order to put you in the best possible outlook, right? Or put you on the best possible track for treatment. And so the All of Us program is really designed to diversify research. And so historically, a lot of populations have been left out of research for various reasons.

Speaker 2
And so we don’t have a true understanding of different factors that impact their health. And so if we shift to precision medicine, we really need to understand those differences. And building this database for healthcare researchers to really begin to understand different factors that affect the health of different populations in order to design more targeted therapies, treatment plans, things like that. And so all of us, the goal is to enroll 1 million participants that reflect the diversity of the United States population.

Speaker 2
Wow. Now, where are you guys with that goal? So we are currently, so the national program is, we have roughly over 650,000 participants that have already enrolled and started the process.

Speaker 2
Out of that 650,000, about another 450,000 has completed all the steps for enrollment. And that means they’ve submitted surveys to answer questions about themselves, their personal health, their lifestyle. They’ve also submitted biospecimen samples, such as urine samples and blood samples, so that their DNA can be sequenced to understand genetic components that affect their health.

Speaker 2
And so we consider those core enrollments. And so we’re roughly at 450, just a little under 500,000. And so the goal for the rest of this year is really try to get over that 500,000 mark.

Speaker 2
And what’s remarkable is through all of the enrollment sites across the United States is the population is 80 percent UBR, which stands for 80 percent of the participants are from populations that have been historically underrepresented in biomedical research.

Speaker 1
Nice. So why would I participate? Besides the fact that it’s really cool and I’m fascinated by this stuff, but why would I participate? What’s my, why would I do this?

Speaker 2
So a lot of the reasons why participants join the program is one, the All of Us Research program is unique in that they value participants as partners. And so as we gather all of this information, one of the main goals is to return results to the participants so they can see how their data is being used to accelerate precision medicine research. And so we send out research highlights to show how your research is being used for different research studies.

Speaker 2
For the individuals, they get ancestry data as well as health-related results data. Those health-related results data is important because through DNA sequencing, you get genetic tests done. And then if basically your DNA is sequenced and then genetic test identity, if you are at risk for different diseases such as cancers or cardiovascular diseases.

Speaker 2
And if you have a positive screen for those, then we set you up with a genetic counselor for free so you can actually discuss those results and decide the proper course of action and help coordinate care with your primary care provider.

Speaker 1
That’s fantastic. I think especially it sounds like it would be good for someone that is adopted, for example. And let’s say we don’t have a lot of documentation on the adoptive parents. And now you’re having your own kids and you’re standing there going, you know, do you have this in your background? And you’re like, you know, I don’t know. This would be a great opportunity to to find that out.

Speaker 2
Yeah, I love that you brought that up because I myself in it, me and my husband adopted three kids from the doctor care system in San Diego and not having their full medical history makes it hard to understand their developmental milestones growing up. So they’re all under the age of four. And so I am eagerly awaiting for the pediatrics program to unveil so that we can enroll them in the program and start to receive some of those information that we are missing in order to, you know, provide the best care that we could for our children.

Speaker 1
That’s awesome. Now, what how much does it cost?

Speaker 2
It actually doesn’t cost anything to participate. So it is completely free of charge. And so enrollment is coming into an enrollment site or completing the steps on your own.

Speaker 2
There is no charge to join. There is no charge for the return of genetic results. And there is no charge if you need to see a genetic counselor based on your DNA.

Speaker 1
Nice. And actually, leave me if you can go more in depth. So the next question is, how do I how do I participate?

Speaker 1
How do I, because you said enrollment sites are online. How do I, what’s the website and how do I do that? So the website is on my Zoom background right there.

Speaker 2
Or right there. And so that’s a great place to find out more information about the program. And on that website, there is a registration button where if you are able to start the process on your own, then you can just go ahead and start creating your account in the participant portal and start filling out surveys and going through the consent material.

Speaker 2
For anyone that needs help with that process, because it is a long process and would just want, you know, a person to guide you through the enrollment. We have our research team is at Community Health Centers locations. We are fixed permanently in Meriden, New Britain, New London and Middletown.

Speaker 2
But we’ve also started going out on the road and visiting other community health center locations throughout Connecticut to help facilitate the enrollment process and raise awareness of the program. But at any time, you can also call our main line or email us and we can easily contact you via phone and help you start that process. And so our email is allofusatchc1.com.

Speaker 2
And our phone number is 860-852-0890. And one of our team members is more than happy to walk you through that process.

Speaker 1
That’s awesome. And you can send that to me and I’ll include that in the description of the show. Perfect.

Speaker 1
Yeah. That sounds great. How long does it take for me to get results?

Speaker 1
Because obviously, you know, people are probably like, oh, you know, wanting to get it as quick as possible.

Speaker 2
Yeah, it does take time to get the results. 400,000 people. So I think it’s like a minute, right?

Speaker 2
Plus, more people are enrolling each day. So it does take time to get the results back. Ancestry data tends to come a little bit faster than the health related results information.

Speaker 2
We’ve seen the results take a short amount of time to a long amount of time. So we really don’t like to give an approximate timeline because we don’t want to really get anybody’s hope up. But we are working with the national program to make sure that all participants get a return of results and working with them to see if there’s any errors that we may help fix to make sure that the participants get return of results.

Speaker 1
Very nice. And so the website’s there. So that website, they can go on and let’s say, because this is obviously going to be out there nationally. they can go wherever and find out, you know, if they’re in Oklahoma, they’d be able to go on this same website and find information. Right. So this website is specific for our community health center with the

Speaker 2
backslash THC. But join all of us.org is the national website that anybody can go on and join and read about more information or learn about programs in their home state or in their hometown where they can go and enroll in the program. Wonderful. Now you said

Speaker 1
ancestry information. Tell me more about that. So am I going to find like a long lost aunt or uncle

Speaker 2
or? No. So it’s nothing like genetic, like some of the genetic kids out there. So it’s not like 23andMe or where they start to connect the people across the U.S. Like you have a sibling in this Right. It’s nothing like that. What it does is it will just tell you where your roots lie from.

Speaker 2
So if you don’t know, like, let’s say you were adopted and you don’t know what your ancestral data is, it’ll just return information that, oh, you, your ancestry is from this part of the world and this part of the world.

Speaker 1
You’re this percentage of this. Yeah. So in terms of privacy, obviously, you know, we’re in the age of like we’re all out there. But, you know, with our medical information, HIPAA and those types of things, how is that participant protected?

Speaker 2
Right. So I would see insecurity as one of the core values of the program and is something that we take very seriously. And so there are precautions that are set up to minimize the risk of participation or of security breaches.

Speaker 2
We can’t guarantee that there will be absolutely none, but we do take all the precautions to minimize everything. And so we like to tell our participants that any information that they submit, as soon as it goes into the portal, it becomes what we call de-identified, meaning that all of their survey responses are inputted, but all of their identifying information, names, phone numbers, addresses are removed from the system. and they’re assigned a unique participant ID so that we can use that participant ID to connect to survey questions, electronic health record information that’s in there, biofessaman information, but you can’t actually connect it to a particular individual.

Speaker 2
The program also has certificates of confidentiality, which they have implemented to prevent the sharing of data with any court orders or things like that, so that things remain as secure and private as possible. And so we don’t share your genetic results information with anyone. Even if you have to go see a genetic counselor, they’ll walk you through how to then, and they’ll provide a clinical test to verify how to download that report.

Speaker 2
And then the individual themselves have to take it to their primary care provider. So we don’t share it between the people.

Speaker 1
I like that. And I like that it’s a part of your core values. I think that’s going to make people feel super comfortable. And it seems extremely well thought out, which is great as well, because sometimes it’s tough.

Speaker 2
Yeah. Yeah. Well, it’s extremely important because historically with some of the research that has been going on, we’re trying to rebuild trust within some of these populations. And so that’s why it’s one of the core values is really trying to make sure that we are being transparent with what we’re doing to try to build trust within the communities because it’s so important that they participate in research. And so really just trying to get them more comfortable in participation as well.

Speaker 1
Yeah, let’s talk about more about that underserved population. Who are they and what do you mean?

Speaker 2
So those historically underrepresented in biomedical research populations include ages 65 and over, right? They tend to be left out of research. Racial, ethnic, marginalized populations have tended to be left out of research.

Speaker 2
members of the LGBTQ community, right? We also have those that are fall under the federal poverty level. And a lot of these reasons why they’ve been left out of research is maybe access to research opportunities, not being aware that they exist. And so really trying to make sure that this program is accessible to all and that we really promote the message that we value participation from all.

Speaker 1
and it’s uh i think the trust i mean i know that you know you know when you’re you know having been someone that has been in that you know uh lower income level i mean it’s kind of like you do it’s kind of like you’re you want to protect everything you don’t want to be given information and and and there’s a lot of uh disappointment too where you’re someone doesn’t do what they say they’re going to do and so it’s like something like this you would be like huh what’s what’s going on there but it sounds amazing. And it definitely sounds like something that’s going to help a ton of people. I love that my doctor right now, I’m not a one size fits all my entire life. It was like, you need to gain weight, you need to gain weight. And now she looks at my weight and go, I haven’t heard that in months from her, you know, cause I’m working, I’m doing what I have to do.

Speaker 1
She’s looking at my numbers and she’s not comparing me to a, you know, 57 year old woman that she’s gone. And so it’s nicer, it’s nicer not to hear you have to gain weight, because like any of us, we all have trouble with our, you know, something that way, who knows what it may be, and either down, it’s not like you’re not trying. It’s, it’s like, but it’s sort of here and go, what should I do? But she’s not one size fits all. So it sounds like this is going to even more, you know, get rid of that one size fits all, you know, so we can, you know, especially with that whole positive body image thing and all that going on, that is so important because nobody wants to go to the doctor. You know, some of us are, you know, bigger bones. We’re not going to be, you know, looking like whoever, you know, and so to me, to them or them, to me, it’s not fair because you can’t do one size fits all. So I love that. I love this type of research and I love what you’re

Speaker 2
doing. Yeah, I think it’s important, right? Because even if you think about beyond an individual, it could be a neighborhood, right? You can be telling somebody that has, that’s in a neighborhood with maybe they’re pre-diabetic and you’re trying to prevent them from, you know, moving into that diabetic range. A lot of the information, eat healthier, move more, right? If the individual lives in a community where there’s no safe basis to exercise, right? Or access to healthy foods, it makes it difficult. So what are other ways that we can help them manage their chronic diseases that match the environment and lifestyle that they live.

Speaker 2
Because it could be sometimes it’s out of their control, right? So really trying to figure out, you know, what are some of the best intervention strategies to implement in different communities?

Speaker 1
Yeah, I like that. And I think that builds trust too, because you see me. You’re not just kind of throwing out buzzwords.

Speaker 1
You can see, okay, yeah, that sounds great. That’s the, you know, pre-diabetic solution, but I live XYZ and you guys will have those customized plans and that’s going to build trust too. Cause you’re not just throwing out, throwing out stuff. Yeah. Tell me about some of the organizations and you might’ve mentioned it in the beginning. So I apologize that you’re, that this whole thing is affiliated with, cause it’s joining all of us is kind of the, which I love. And it’s funny, I’m looking at the back, your backdrop now, which is just, I think it clicked like maybe five minutes. Oh, be one in a million. They want to be brilliant, by the way, but being a person. But what is the organization, the higher kind of organization

Speaker 2
that all of this is affiliated with? Right. And so, like I said, this program is funded by the NIH.

Speaker 2
And so within the NIH, we have different, what we call regional medical centers. So these large academic institutions that are enrollment sites. And so if you’re in California, the UC systems, right? But in Connecticut, there’s Yale. So all of these different areas are enrollment sites. So we have enrollment sites all over the US, or at least if they’re not in your state, the option for online enrollment. And so there we have numerous participations and the map is on the website joinallofus.org. Community Health Center is a federally qualified health center. And so we’re joined by seven others that are under the MITRE Corporation that help us with our enrollment sites. And I know that there are other federally qualified health centers that partner with the regional medical centers or the academic institutions as well to really facilitate the

Speaker 1
enrollment process. Nice, nice. Tell me about your background because you know a lot. There’s a lot

Speaker 2
going on there. So I’m also, so besides being a PI at the, with the All of Us Research Program at the Community Health Center, I’m also a senior research scientist with the Weissman Institute, which is a research education and policy arm of the Community Health Center. And a lot of the work that we do is trying to innovate healthcare systems, access to care, interventions through research education and then trying to include self-policy as well. And so I’ve been here for about a year, but a large part of my career has been spent in the academic institution, where I was a professor within the biology department at California State University, LA.

Speaker 1
Wow. That’s awesome. Wow. That’s phenomenal. I know my daughter is very interested in the whole genetics world. So I’ll have to maybe have her shadow you one day or something like that.

Speaker 1
be fascinated by it. Every time I say something, she’s like, well, no, they wouldn’t be a blonde baby because of that. And I’m just like, she loves it. She loves it. You know, that whole thing. So that’s great. Well, one more time, tell us how we can get in touch with your organization and, you know, yeah. Right. So again, we run out of the community health center

Speaker 2
in Connecticut. This is our website that you can join to learn more about the program and it actually connect you to our all of us program at community health center um our email again is all of us at chc1.com and we monitor that frequently regularly so that we will make sure to respond to you and we also monitor our phone lines 860-852-0890 um so please give us a call send us an email or um look at our website and we’d love to help you become a participant in the all of us research

Speaker 1
program. That is awesome. So again, I’m Siobhan Mattingly, Senior Research. I want to be like you.

Speaker 1
Senior Living Specialist here at the Heights at Avery Heights. You probably hear tons of noise in the background. That is our amazing renovations that are going on. So we’re renovating our whole lobby and everything. So we welcome folks to come on in and check us out. We’re excited about that.

Speaker 1
And until next time, we’re definitely going to have you come back in when you get closer. Yeah, Yeah, yeah. Very interesting stuff.

Speaker 1
And I want you to send me some materials too so I can pass them out to the gang here because we definitely have a lot of over 65 here. So we can maybe build that number for you for sure. Perfect.

Speaker 1
And we would also love to come in person

Speaker 2
and talk more about them in person.

Speaker 1
I would love that. Yeah, that would be wonderful. All right.

Speaker 1
Well, thank you so much. I appreciate it. No problem.

Speaker 1
Have a wonderful day. You too.