Dr. Sarah Biber, the program director for the National Alzheimer’s Coordinating Center (NACC), joins the podcast to discuss efforts to increase representation and equitable practices across the 37 Alzheimer’s Disease Research Centers (ADRCs). She discusses key disparities in Alzheimer’s disease research, why diversity and inclusion are imperative in research, and what is being done to address these disparities with the data collected from research participants. This episode is the first of an upcoming series featuring speakers from the Fall 2022 ADRC Meeting, where the overarching theme was Diversity, Equity, and Inclusion (DEI) in ADRC research and operations.
Guest: Sarah Biber, PhD, program director, National Alzheimer’s Coordinating Center
Learn more information about the National Alzheimer’s Coordinating Center and watch the presentation recordings from the Spring ADRC Meeting on their website.
Watch Dr. Biber’s presentation at the Fall ADRC Meeting, “Delivering on NACC’s Mission Through Modernization,” on YouTube.
Watch Dr. Biber’s presentation at the Fall ADRC Meeting, “Amplifying the Scan Initiative,” on YouTube.
Listen to Dr. Biber’s previous episode, “The Future Of Sharing And Accessing Alzheimer’s Disease Data,” on our website, or wherever you get your podcasts.
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Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.
Dr. Nathaniel Chin: Welcome back to Dementia Matters. Diversity, equity and inclusion are imperative for Alzheimer's disease research. In past episodes of the show, we've discussed the importance of including researchers and research participants from diverse backgrounds and highlighted studies that focus on particular underserved communities. While there has been improvements in diversifying the research being done at the 37 Alzheimer's Disease Research Centers, or ADRCs, across the country, there's still a lot of work to be done. To continue this mission, Dementia Matters is collaborating with the National Alzheimer's Coordinating Center, and the National Institute on Aging (NIA). With interviews from researchers at the fall 2022 ADRC meeting. This series will shine a light on the latest efforts to increase representation and equitable practices with Alzheimer's disease research across the country, and better understand the unique ways underserved populations are affected by Alzheimer's disease. Opening our new series is Dr. Sarah Biber, program director of the National Alzheimer's Coordinating Center, known as NACC. Dr. Biber has previously joined us in Dementia Matters for our series on the national strategy for Alzheimer's disease and data research, and we're excited to have her return to kick off our discussions on diversity, equity, inclusion within the ADRCs. Welcome back to Dementia Matters, Dr. Sarah Biber.
Dr. Sarah Biber: Hi, Nate. It's great to be here with you again today. Thanks so much for having me.
Chin: This year's fall ADRC meeting had an overarching meeting theme of diversity, equity and inclusion, and it's my understanding that this is the first time the meeting has done something like this. Why the change to a meeting theme and why was DEI chosen?
Biber: Yeah, it felt really important to use that meeting as an opportunity to shine a light on this important topic. DEI was the overarching theme of the meeting. It was also woven throughout every session and touched on many aspects of DEI, from social determinants of health to best practices for respectively engaging historically minoritized populations, to the impact of race and ethnicity on AD biomarkers. We heard from scientists about a range of DEI-focused research topics and also heard from community leaders like Rev. Howard Jenkins, who spoke about what it looks like to meaningfully and sustainably engage underrepresented groups in research studies. There are so many important reasons for the focus on DEI and Alzheimer's and related dementia research. For starters, the United States population is ethnically and racially diverse, and we need to ensure that research studies are more representative of the U.S. population, so the results can be more generalizable. We know that Alzheimer's and other dementias disproportionately affect Black Americans, Hispanic Americans, Asian Americans, American Indian, Alaskan Natives, members of the LGBTQ community and women. And we have so much that we need to learn about these health disparities and how we can address them. Diagnosis and treatment of ADRD is delayed in minoritized populations due to limited access to healthcare, lack of insurance and poor healthcare literacy. In order to address these problems, it's important that we understand, enhance our understanding of ethno-racial differences across the full spectrum of ADRD research from neurobiology to clinical phenotype to biomarkers, diagnosis and treatment and prevention. A critical component of this is really gaining the trust of minoritized communities and really being able to improve recruitment attention and retention in ADRD studies and clinical trials. Our ultimate goal is to reduce health disparities and healthcare discrimination and improve access to high quality care. This theme also touches on an important priority for NIA, which is to really be able to better understand the environmental, the sociocultural, behavioral and biological drivers of health inequities and disparities as they pertain to Alzheimer's disease and related dementia. So lots and lots of reasons, and I really think that the ADRC program has an incredible opportunity to play a critical role in uncovering these contributing factors to disparities in ADRD. This program has collectively contributed to important discoveries already in this area, and there's really an exciting opportunity to build on these successes further.
Chin: I want to ask a slightly nuanced question based on that the last part of your answer. That is, one, can you recap for our listeners sort of the role of NACC when it comes to these 37 ADRCs? And two, why is NACC uniquely positioned then to be asking this of the ADRCs? Why is it so important that these centers really start thinking more about DEI?
Biber: Yeah, I mean, I think this is a goal of the ADRC program and NACC is here to help support and facilitate that. By being able to help organize this meeting in collaboration with the executive committee focused on DEI, that's one of the ways that NACC can help support the ADRC program in reaching its goal of advancing health disparities.
Chin: To add to that, as someone who works at an ADRC, you know, the ADRCs are hubs. We are designed for other scientists, but really for participants to come in, and they give themselves and their time, their energy to the understanding of Alzheimer's disease. But fundamentally it's about data as well as people. Of course, it starts with people, but data comes from people and NACC is that repository, and not only repository, but you clean up the data, you make the data standardized and useful for scientists to then really understand the disease. So it makes sense to me as someone who sees participants and communities. Well, of course, we need our data team to be on the same page and to require this because it's such an important part of understanding Alzheimer's disease. Before we move on, I did want to ask a couple of questions that are a little bit more basic, but just so that we can have run the same the same plane here. In regards to terminology, what is the difference between race and ethnicity and what are the defined categories when we think about these two terms?
Biber: Yeah. I think it's really important to define that clearly as we think about these things. I think race really refers to the concept of dividing people into groups based on sets of physical characteristics and ethnicity relates to shared cultural characteristics such as language, ancestry, religion, beliefs, diet, etc. Some of those categories, ethnic categories would include Hispanic or non-Hispanic and those ethnic categories apply to all races.
Chin: And then I know that in our upcoming podcast with some of the guests from the NACC conference, they'll go more into detail, but I'm hoping you can provide an overview for us. What are some of the key disparities in the field of Alzheimer's disease and just related causes of dementia?
Biber: Yeah, I'm happy to talk about that. Are you talking about within specific groups?
Chin: Within specific groups, yeah.
Biber: Yeah, so there are, I know that other folks are going to talk about this more, but there are really critical disparities. One that is incredibly shocking is that African Americans are twice as likely to have Alzheimer's disease, but are half as likely to be diagnosed with it, so that in itself is a huge problem. The disease is also underdiagnosed in other populations as well, and is specific groups are disproportionately affected by Alzheimer's and related dementias. I mentioned African Americans. That's also true for Hispanic populations, as well as American Indian, Alaskan Native populations, as well as others.
Chin: When we think about health disparities research, why is that so important in the field? And what kind of results come from that that inform us about Alzheimer's disease?
Biber: Yeah, so I think there's a lot that we have to learn from disparities research. For one, we know that social determinants of health has a huge impact on health outcomes, including in Alzheimer's and dementia. So it's really critical that we be measuring factors that relate to the social determinants of health and be able to understand how those impact the course of the disease, as well as impact specific groups.
Chin: You don't know what you don't know, and if we don't look for it, how are we ever going to fully understand the broad implications of our life experience on a biological change in the brain? That makes perfect sense, but it's something that is only recently being really heavily investigated. Now turning to the meeting itself, the fall ADRC meeting. Knowing all of this, what were the goals before? And the meetings already happened, but if you could think back to when you were developing it, what were the goals for having the meeting? What did you hope to accomplish, and do you feel like you were successful?
Biber: Yeah, I mean the goal was really to put our heads together as a community and to come up with concrete next steps for advancing disparities research across the ADRC program. I think the meeting was a success in a number of ways, but it was never intended to be a standalone effort, right? The intention was for this meeting to really just be one part of a much larger push to really convene research further around this topic and to move the field forward, in particular, across the ADRC program. You know, I think there are some real highlights from this meeting. I know you're interviewing a number of the wonderful speakers that participated there. People were incredibly engaged. There were nearly 300 people that joined in person, 500 folks virtually, which is the largest turnout ever for an ADRC meeting. I thought another highlight was the ORE Core session. I think the Outreach Recruitment and Engagement Core did an especially amazing job of bringing new voices and perspectives into the discussion, including community leaders from underrepresented groups who really could bring some new ideas to the table. The ORE Core session was the most highly attended session of the meeting. There were great questions and engagement from in-person and online participants. I think people were really listening, which is an important piece of this, and this is not the sort of thing that you can fix with one meeting, right? So really the goal is to continue to build off of those conversations and to take concrete next steps as a program.
Chin: Now getting to NACC specifically, what is being done in your world? Of collecting the data, collating the data, to address health disparities, thinking about how you interact with all of the ADRCs on a program-wide basis?
Biber: Yeah, I mean, the role of NACC is really to serve as a data coordination center for the Alzheimer's Disease Research Center's program, but also as the communication and collaboration hub for the ADRC program. So we're trying to support DEI across all of those areas of work that we do. So one way that we do that is by holding these meetings, this meeting with this DEI theme. We're also going to be weaving DEI into the upcoming meeting that's happening this spring on May 1 and 2, 2023, to be able to continue that conversation across the community there as well. In addition to that, we are trying to support DEI-focused research. NACC has every year gives out two to three new investigator awards to support early career scientists across the ADRC program and advancing their research. In this past year, we've had an award focused on research at the intersection of DEI and health disparities. And we really, this is a part of an important step for really being able to incentivize and highlight research in that space and support researchers who are focused on advancing research in that area. In addition to that, we're really, as part of this update to UDS that's underway right now, building new tools in collaboration with the clinical task force is going to be really important for this. There are a number of new mandatory forms that are going to be part of UDS v4 that are focused on the social determinants of health, measuring things like occupation, income, access to healthcare, discrimination exposure, transportation access and things like financial security and social connections. So it's really exciting that the Clinical Task Force has decided to make these forms mandatory and that we are now going to be collecting this data from across thousands and thousands of participants across the country. The last thing I would say is that a couple other things that we're focused on right now, related to this as well as as part of UDS v4, we're also working on translations. So we're going to be translating UDS v4 in collaboration with several UDRCs into Spanish and Chinese to be able to increase access to UDS v4 for non-English speaking populations as well. These forums are going digital. That in itself is going to make these forums more accessible to folks in remote environments and to enable easier access to data collection. Lastly, we are, at the last meeting, we also convened a discussion between ADRC directors and the Indigenous ADRC advisory group, and we are going to be partnering with that group to support them in developing best practices for the ADRC program. For how ADRCs can respectfully and sustainably engage Indigenous populations in research.
Chin: It's an incredible set of initiatives. It seems very overwhelming when you say it, but it's also very needed because you're hitting all the different communities or most many of the different communities that we need better representation, and it takes a lot of time, but it takes a lot of intentional effort to engage the community, to engage the research, to bring people together. Grateful that you're working on it, but I don't envy the amount of work it is going to take. When you think about all of this. How does data collection help achieve this mission of addressing health disparities?
Biber: Yeah, that's the part I forgot to mention. We also collect data. We have data on more than 47,000 participants at this point, 16,000 of which are active participants, as in they're alive currently, and that number is growing every day, so we really want to be doing more to collect information on participant diversity. That is something that we're going to start collecting in real time and that ADRCs will have access to – through private dashboards – so they can see in real time what the diversity of their participant population is and how that's evolving over time. I think it's really going to be important to have great data on diversity as well for researchers, right? Who want to understand what kind of data is available from the NACC repository that they can use for their research focused on ADRD and diversity, so we want to make that information more available to researchers everywhere as well. We are building a number of tools as part of the modern data platform that we are in the process of transitioning to that will be available to researchers through our data front door, to really help amplify folks' ability to do disparities research using NACC data.
Chin: Well, to end, Sarah, knowing all the things you've talked about, all these interventions and these initiatives that you're working on, where do you hope we are as a field in the next five years?
Biber: Yeah, I mean, I really hope that in five years, all of these great initiatives that are underway right now are yielding fruits, as in, we have much broader engagement from minoritized populations within represented within the ADRC participant pool, and that those participants are being engaged in a respectful and sustainable way, and that we're making new discoveries using NACC data, right? About disparities research that will have collected, five years of social determinants of health data and be really have the opportunity to start to ask and answer questions in that arena, so I'm really excited about that and to see what new discoveries are made about this important topic using NACC data.
Chin: Well, thank you again, Dr. Sarah Biber for kicking off this series. After this, we will have interviews with Drs. Lisa Barnes, Crystal Glover, and Gina Green-Harris, who are going to go more into detail into some of the things we covered today. But thank you for your information and really being able to explain why data matters so much and how it does help drive some of our scientific initiatives.
Biber: Thank you. It was wonderful to be here with you.
Outro: Thank you for listening to Dementia Matters. Follow us on Apple Podcasts, Spotify, Google Podcasts, or wherever you listen or tell your smart speaker to play the Dementia Matters podcast. Please rate us on your favorite podcast app -- it helps other people find our show and lets us know how we are doing. Dementia Matters is brought to you by the Wisconsin Alzheimer's Disease Research Center at the University of Wisconsin--Madison. It receives funding from private, university, state, and national sources, including a grant from the National Institutes of Health for Alzheimer's Disease Centers. This episode of Dementia Matters was produced by Amy Lambright Murphy and Caoilfhinn Rauwerdink and edited by Taylor Eberhardt. Our musical jingle is "Cases to Rest" by Blue Dot Sessions. To learn more about the Wisconsin Alzheimer's Disease Research Center and Dementia Matters, check out our website at adrc.wisc.edu, and follow us on Facebook and Twitter. If you have any questions or comments, email us at firstname.lastname@example.org. Thanks for listening.