ISTAART Relay Podcast – Diversity And Disparities PIA

Voiceover:

Hello, and thank you for listening to the fourth season of the ISTAART PIA relay podcast brought to you by Dementia Researcher. ISTAART is a professional society and part of the Alzheimer’s Association representing scientists, physicians, and other dementia professionals active in researching and understanding the causes and potential treatments of Alzheimer’s disease and other dementias.

In this five-pass series, we’ve asked members of the ISTAART professional interest areas to take turns interviewing their colleagues and being interviewed themselves with the interviewee going on to be the next episodes interviewer. We’re showing you’ve listened to these before, so you’ll know what to expect.

We’ll be releasing one of these podcasts each day in the buildup to the Alzheimer’s Association International Conference. Which this year, takes place online and in Amsterdam. So, sit back, turn up the volume, and be ready to hear about these individuals, amazing research fields, the work of your peers, and just what you can expect at this year’s conference. Thank you for listening.

Dr Dave Cash:

Hello and thanks for tuning in. I’m Dr Dave Cash and I’m a research fellow at the Dementia Research Center in London at the UCL Queens Square Institute of Neurology. I’m also the incoming chair of the neuroimaging PIA. Today I’m delighted to be talking with Dr. Shana Stites, who is an assistant professor in the Department of Psychiatry at the University of Pennsylvania.

Hi Shana, thanks for taking time to be part of the relay podcast. Can I start by asking you to introduce yourself and tell us which PIA you’re involved with?

Dr Shana Stites:

Absolutely. It’s a pleasure to be here and it’s very nice to meet you. Like you said, I’m Shana Stites. I’m a clinical psychologist by training and I am currently co-chair of the Diversity and Disparities, PIA and then and incoming chair.

Dr Dave Cash:

And how long have you been involved with the diversity and disparities PIA?

Dr Shana Stites:

It’s been a few years. It was pre pandemic, so right as things started getting, I guess 2018. 2019.

Dr Dave Cash:

And perhaps you can start telling us a little about your own research and what brought you to dementia research.

Dr Shana Stites:

So, I investigate, or I study a preclinical experience of Alzheimer’s disease. And so, these are individuals who may have and may know they have biomarkers that signal a future risk of developing dementia. But at the current time, they’re mostly sort of cognitively typical. And I’m interested in that lived experience.

What it’s like to learn you’re at risk, what it’s like to be at the early part of experiencing some of those declines. And how to help people optimize their quality of life and their wellbeing during that period. As well as how we detect some of those early changes in our subjective cognition.

And what brought me to dementia research was the people and the large number of opportunities that have exploded in recent years. It’s very exciting work to be sort of on the precipice of these advances in diagnosis and treatment and helping people live better.

And of course, recognizing some of the disparities that exist within dementia. Whether that’s sex-based, gender-based or race-based, really resonated with me in terms of seeing opportunities to help understand and mitigate those disparities.

Dr Dave Cash:

And imagine as trials are moving more towards the area of groups that you’re studying, this sort of discussion around disclosure and how to handle people being at risk is a really important one to be having.

Dr Shana Stites:

Yeah, I mean there’s multiple levels here. Like within the trials, what’s the proper best way to return this information? In terms of this information, the results from gene and biomarker testing to individuals. And then much of my work sort of starts to lean into what happens to individuals in preparing them to learn that information.

When people come to the table before they even learn the result, what type of anticipations do they have? And how do those expectations and anticipations inform how they’re going to respond to that result? And there’s of course, sociocultural differences in how people approach just the entry into learning that information.

And then post the disclosure, once people have that information, what do they do with it? Is it one and done and they move on to other things? Or who are the people that start to accommodate that information into their daily lives to make changes in financial planning or wellness activities or health related behaviors?

Dr Dave Cash:

Maybe you could talk a little bit about are their sort of some common effects that it might have on some of the batteries that you’re taking? Because I know when we’ve dealt with patients with autosomal dominant forms of dementia, we tend to see some problems with cognition or anxiety, or other things sort of masked even when they’re not carriers in the long run.

Dr Shana Stites:

Yeah, it’s so complicated. I mean, we have things called these mysterious age-related changes that are happening that can present differently for one group of people to another. And then we can have that multi-morbidity going on in which we can see changes in cognition that may be due to an Alzheimer’s specific pathology or may not be.

Just to add further to that, there’s this curious finding that we don’t quite have a handle on what types of pathologies are causing or leading more directly to what types of symptoms. And we also don’t know when. People can be identified with biomarkers decades before or never start to show those symptoms.

And so, from the lived experience end of it, it can leave people with a lot of ambiguity. They have a marker, they’re not sure what that marker indicates if anything. And how quickly they might need to make changes if changes can help them or maybe not at all. Maybe it’s not useful.

We still have so many questions that are on the table. And I think in terms of diversity and disparities work, it’s understanding that picture overall in the context of all kinds of new biomarkers that are coming out. But then also increasing our representation and diversity and research to understand how those types of expectations, reactions and calculus might vary for different groups of people.

Dr Dave Cash:

And coming to that sociocultural element you were talking about; I imagine that there might be sort of different cultural expectations on the sort of external caregiving unit and what they’re required to do depending on cultural backgrounds and things like that.

Dr Shana Stites:

Yes. Actually, that’s a two-part sort of response to you. You started out asking about trials. We have this study partner requirement in our prevention trials. So, individuals who are interested in enrolling in the trial are asked to enroll with a knowledgeable informant who can report on their cognition and adherence to protocols and other parts of daily life.

And right now, in our prevention trial, there’s a huge effort in the field, which is great, to increase the sociocultural diversity in those trials. But by and large, it’s a pretty homogeneous group. It’s mostly women, it’s mostly white. And then when we start to think about study partners, it’s mostly spouses.

So, husbands of women. Or it’s daughters of women. And that’s pretty much who we get to study in terms of who’s enrolling in the prevention trials. There are some interesting studies that are coming out in looking at those dyads to see who you are and who’s rating you matters.

How you report on somebody else’s memory, for example, can differ based on whether you’re a son, a daughter, or a spouse. And it can vary based on who you’re rating, whether that’s your mom or your wife or your husband or your son. Part two is to say that diversity is really limited.

I can say it’s mostly women in the trials and mostly women reporting on women and mostly white and mostly older adult. When we actually look at the burden of Alzheimer’s disease more broadly, it’s a much more diverse community. It crosses sociocultural groups.

African Americans are one of these subpopulations that experience the greatest burden from Alzheimer’s disease. And yet we understand that caregiving structures and then likely informant structures would also differ within that subculture, those subgroups. But we don’t know.

There’s not a lot of research in that area to understand how to then change our research structures to get more diversity in research. And how that diversity in informants and participants or patients is going to change how people report on each other and how they view each other and understand cognition. Sorry, that was a lot to get out there.

Dr Dave Cash:

And I guess there’s the missing data question of, there’s people who are unable to find caregivers. What do they look like and what are the implications to diversity and disparity there?

Dr Shana Stites:

That’s right. So, from the little bit that we know about this in the research comes from some of our standing cohort studies like HRS. And if we look at HRS and who’s enrolling as an informant or acting as an informant in that study, what we find is that it’s the same similar structure, mostly spouses, mostly adult daughters.

But then we actually see some sons that are stepping up. And then there’s this category that gets lumped into others. And we really need to learn more about that group. Because there we have aunts, uncles, grandkids, and neighbors.

It’s more about who people have relationships with who are willing to step into this role when we stop viewing those relationships through well-defined social structures like children and spouses. There’s a lot of different people who might be willing to step up. But we may need to make changes to our research infrastructure to make that more possible for those individuals who would be considered non-traditional to step into those roles.

Dr Dave Cash:

One of the first steps I guess is sort of outreach or kind of making people understand who a caregiver in those sorts of things can be.

Dr Shana Stites:

A caregiver and what a family looks like, an informant. Because we have researchers, when I say we, have fairly rigid views of who we think informants can be or should be or are. We form those views based through our sociocultural understanding, perhaps who we see in clinic.

Who is also a sort of a self-selected group who’s coming in. It’s a biased lens. And so, to your point, it would be expanding our understanding of who we think could fill that role. And what family systems and care networks and friend networks look like. It would also be challenging some of the attitudes within the field.

There is some pressure in research to standardize, to put protocols in place, and diversity can be the antithesis to that. We can see it as a threat to that infrastructure. Well, you can see that within the informant literature. If we get all spouses or we get them between spouses and children, then we’re narrowing in, making it more homogeneous in ways that might protect or ensure the reliability and the validity of our research.

And we really need to push back against those ideas because we’re trying to get towards diversity. And the minute we start to protect our research from diversity, we’re now working against ourselves.

Dr Dave Cash:

Yeah, it’s that problem of squeezing variability as much as you can, but at what cost in terms of reducing what it says about the overall population. So, what are the hot topics and exciting areas in your field at the moment?

Dr Shana Stites:

Well, some of it we’re already talking about in terms of diversity and inclusion and representation within research. That’s a very hot topic we’re very interested in. Because as we look around the field, no matter where you see, you see sort of the same storyline of our research samples.

Our clinical populations are far too homogeneous. And we need to expand who is joining, who are asking to join and who are inadvertently keeping out. Hot topic. Another hot topic, and this might be coming up for AIC in particular that’s on our mind, are these emerging therapeutics and what that means for equity in Alzheimer’s disease research.

There are some drugs that are now either coming positive in our prevention trials or even being approved by some of our federal agencies. And so, as those drugs start to come to market, there’s going to be a lot of decisions around what are the criteria for a patient to access them, for a clinician to prescribe them, and where they might be accessible. We’ll be having a panel at our PIA Day at AIC that will invite some experts to talk on those matters.

Dr Dave Cash:

Actually yeah, real interesting results according to sex in some of those trials, from what I remember. And that they were positive for one, but not for the other from what I remember, or very marginal.

Dr Shana Stites:

Yeah, are you talking about the Lecanemab trials, one of the ones that came out? Yeah, there definitely seems like there’s something there. I think this signal was attenuated where it just didn’t seem to perform quite as well across as many of the outcome measures, they were using in the study. Absolutely.

And that brings us to issues around Apo-E and Apo-E 4 in particular, and how these drugs might perform differently based on the presence of alleles for individuals related to Apo-E. And for diversity and disparities focused researchers, we understand that Apo-E varies across our subpopulations, our sociocultural groups. And so, understanding how that interaction may occur between the efficacy of some treatments in various subgroups and how it could vary.

Dr Dave Cash:

I seem to remember you’ve just come out recently last year or so with a big review article. Is that right? Did you want to tell me a little bit about that?

Dr Shana Stites:

Thank you for that.

Dr Dave Cash:

It seems to highlight a lot of these.

Dr Shana Stites:

So, the one that came out most recently was a review of biomedical research. We went through the existing peer reviewed literature to understand how researchers in biomedicine. So, outside Alzheimer’s disease has been studying sex and gender. What are the measures they use basically?

We didn’t get into definitions of those things, but just how are they measuring it. With the hopes that if we could understand some good examples of how these things are being measured in other areas of biomedical science, we could help inform our burgeoning studies in that area within Alzheimer’s disease. And so, that review came out in Alzheimer’s and dementia diagnosis and management, I believe, DADM.

I’m trying to remember the rest of it. And it was quite interesting in terms of their being very… Even when you expand the lens out to biomedical science writ large, there’s not a lot of diversity in the types of measures. We found actually a sort of reiteration of a prior review we did that was specific to Alzheimer’s disease.

Where in most cases, sex and gender are being measured by self-report. Where there’s individuals indicate whether they’re men or women. There’s a lack of protocols and a lack of clarity if we are going to try to differentiate between this construct called sex, then that’s usually more biologically informed.

Or one that’s called gender that’s more socially informed. The measures aren’t doing that. So, how would we move measures forward that would allow us to try at discerning how people report their identity as being a biological identity or sociological identity? And there is some of that work going on.

In fact, NAC has just updated version four of its battery, which NAC is the National Alzheimer’s Disease Coordinating Center. And it puts out the batteries that are collected throughout the Alzheimer’s disease research centers here within the US. And so, they’ve updated their battery to now be collecting sex as assigned at birth as well as current gender identity and sexual orientation.

So, that new battery will be coming out. But as this review article that we put out also started to get to, is there weren’t any other types of measures or very few that were being used in terms of how we are discerning hormone profiles. The point being, how do we capture human variants?

That’s the bottom line. And the fact is if we keep relying on self-report identity to do it, we’re missing hormones vary across groups, physical size, anatomical structures, the medical histories. All of these things vary across subgroups in our populations.

And at this point, our review is showing that there’s maybe one or two measures out there. One or two studies where that’s been looked at across biomedical science. And we really need to get better at doing that.

Dr Dave Cash:

And I think also in that review, you talk about how sort of gender norms and identity change across generations in different cultures. And kind of getting back to a point you made earlier, how would you propose doing some things that might harmonize data so that you can work across studies versus embracing the diversity that’s going on there?

Dr Shana Stites:

So, I think we can do both where we can harmonize and appreciate diversity. We do have a big problem right now, two big ones just as a starting place. One of which is there’s an interest. I was just on a webinar yesterday from National Institute on aging that was looking at different data sources and harmonization.

And in terms of sex and gender measures, it’s very risky as we start to harmonize across measures. Because the protocols have been really insufficient in at least documenting how those variables were collected. It’s so wide ranging that in some cohorts it was really a research coordinator looking at a person and deciding of what category they fall into.

In other studies, they were asking about a sociologic identity. Where in other studies, they were asking about a biologic identity. So, when we start to think about trying to harmonize across all of these data sets, we’re taking a risk there. We don’t know if our variables are really in a position that what we’re assuming is static.

And then secondly, the review article that we had come out earlier this year revealed that there are some measures of gender that were developed in our US-centric that are being picked up and used globally. And we really need to take a pause at that point. Gender varies over time and culture.

And to be thinking that we can just pick up measures from one place and use them in another place. What we could be doing is actually enforcing our norms from one culture onto the norms of another culture. Which is, I’m not sure I can say actually pretty firmly.

That’s not the intention or the purpose of our research. We want to go into a culture and understand the variance that’s happening, not necessarily transform it through our research into something else.

Dr Dave Cash:

And it seems like with the cognitive tests, there’s been a lot of translation into different languages and some thought about some of the cultural elements in those cognitive tests. So, why wouldn’t we be doing the same thing in these sorts of measures that you’re talking about?

Dr Shana Stites:

That’s an awesome point. I believe that we can do it. And I think that it’s the right thing to do. And I think that we as a community recognize that. We just haven’t gotten there. But it also means that understanding and studying sex and gender within Alzheimer’s disease is even farther behind where some of the other things that we’re studying cognition or such, are much more advanced.

Which then raises another issue because those things aren’t separate. When we do our cognitive testing, we rely on our sex-based norms to adjust those tests. And the more we dig into the problems insufficiencies with how we’re studying and understanding sex and gender within our research, it cast out downstream effects on other parts of our research too.

We have over 800 people in our diversity and disparities PIA, which is fairly large. But I feel like we could use several thousand more because there’s just so much work to be done.

Dr Dave Cash:

ISTAART is a great organization to go ahead and get started in. And it’s free to join the PIA once you’re a member of ISTAART. So, there’s no reason not to join in these sorts of things, different PIAs and hear more about it. Speaking of the PIA, maybe talk a little bit about how the work of your PIAs you believe supports your field of research.

Dr Shana Stites:

Yeah, absolutely. I can say from my work specifically as well as the broader Alzheimer’s disease community, our PIA has been doing great work. I feel like we’re getting better and better each year that passes in being a main function being. That we bring together people from a wide range of disciplines who all have a shared common interest in diversity and disparities work.

And through bringing those folks together, they write review articles. And we also have workshops and meetings. We have special interest groups, which are smaller collections of the 800 people within our PIA get together and attend talks and share ideas. And actually, sometimes have quite robust conversations.

So, that exchange of information and ideas, that’s absolutely crucial. That’s what happens within our PIA. Coming out of our PIA, some of these review articles that we write, I am synthesizing research from that otherwise I’m not sure would be getting out in the world quite the same way. And people are at least pointing to other articles through that research that the broader community can access and drill down on.

Dr Dave Cash:

You talked a bit about; I get how some of the research is a bit behind and there is sort of norms around gender that are kind of established. And I was just wondering how much pushback you get from both the participants and the researchers when talking about these different elements of diversity and disparity? And how much do you think the PIA can help break down some of that pushback?

Dr Shana Stites:

Oh, that’s a good question. I started looking at that question I think a year or so ago. The conversation was about introducing. So, what’s called SOGIE questions to NAC and other research cohorts. These are sexual orientation and gender identity. And so, it’s really about asking people the sex they were assigned at birth, what their gender identity is currently, and then their current sexual orientation.

And there was a lot of concern within the field that those questions were going to be problematic. And in fact, cause participants to not want to be part of the research or to skip questions or just quit a questionnaire altogether. And I was curious about that.

And that was how I sort of started looking into some of this. We started pilot testing some of these batteries. And for the most part, most people of our older adult participants don’t blink an eye. They just answer these questions.

Occasionally, you might get somebody who has a question about them. But not even so much in the current version of the questions we’re using because they’re pretty clear. What sex were you assigned at birth? Most people were assigned a sex at birth.

I think it actually even goes so far as to specify on your original birth certificate. So, there’s no ambiguity. People can understand how to answer those questions. Most people in the hundreds of people so far that I’ve seen the questionnaires be administered to, I think I had one person.

And then I did an online survey of 3,500 people and I had one person who took issue with it. And so, I’d say the base rates there, at least for our participants having problems with these questions, are very low. Most people are fine.

I’ve heard a lot of actual positive things from people who especially identify from sex and gender minoritized communities of being thrilled to see these questions. Because they feel like they’re being recognized and that it’s a safe space for them to participate. On the research end, it seems a little messier for researchers.

There are some very legitimate concerns that have been expressed. There’s an element of redundancy in some of these questions. And so, in research cohorts where we’re jammed with questionnaires, we can’t afford a lot of redundancies. And so, some people are irritated by that.

Other people are concerned that as we parse out these smaller and smaller groups, that our cell sizes might lead to some groups being excluded from research. Let’s say we can produce a pool of a specific type of minoritized gender community, but there’s only five people in that cell. What do we do with those individuals?

And those questions haven’t been answered because there’s that few different options. But those conversations aren’t happening for what we do. So, in large, there’s a concern that our efforts to be more inclusive in our research may have downstream negative consequences leading people to be excluded.

And then of course, there’s a group within the research community that’s sort of sees this as one more change. As researchers, we’re highly adaptive to change. We study science, we make discoveries, and then we change our science based on those discoveries.

And they see the evolution of our studies and inclusion of sex and gender as being all of those other areas in research where discoveries are made, narratives change. And then our research is then changed in reaction to that.

Dr Dave Cash:

A lot to consider even when the motives are good, and the pushback is not as bad as one might think. So, regarding the PIA, maybe you could tell us a little bit more about the committee itself, how you guys organize your group. You mentioned a little bit about some of the subgroups, but a little bit more.

Dr Shana Stites:

So, we have an executive committee that has a chair, a co-chair, and a program’s chair. I think most of the PIAs are structured sort of the same way. Chair, co-chair, program’s chair. We have a graduate student or student liaison. I feel like there’s someone else I’m missing in there.

And the communications chair necessarily makes up the executive committee. And then we have special interest groups and working groups. And really, I’d say the difference between them is really only structural in terms of the terminology that I started using at the time these groups were formed, I think is the bottom line of that.

So, we have a special interest group that’s on lesbian, gay, bisexual, and transgender issues. We have one that’s on sex and gender from more of a social or sociological perspective. I want to discern that from the PIA that’s on sex and gender from more of a… Or sex differences that’s focused more on biological issues.

And then we have some working groups on social and structural determinants of health and rural health. And low- and middle-income countries with a primary emphasis of that working group being, expanding some of our research infrastructure globally. And of course, diversifying participation in research.

Dr Dave Cash:

And those are the groups that are producing a lot of the white papers, it sounds like, in the review articles. Is that right?

Dr Shana Stites:

That’s correct, yeah. I think at this point, each one of those groups has either published or is in the process of writing a review paper. And that’s a great way for people who want to get involved to reach out to one of these groups to ask what sort of papers are underway. Those who already authored a paper, I think some of them are back actually looking at another one.

Just because we have so much expertise within these special interest groups and working groups in the PIA at large that it makes sense for people to be getting together and being excited about ideas. And then turning those ideas into paper.

Dr Dave Cash:

And how long has the PIA been going?

Dr Shana Stites:

I’m going to say it’s eight years at this point. That might be a little long. So, I came in after it had been about a year or two in. So, doing math puts us around six or seven, I think.

Dr Dave Cash:

For some of the leadership staff, it’s two years, then two years, then two years as past chair. So, it’s kind of a six-year involvement with the PIA.

Dr Shana Stites:

Yeah, for some of the groups. I’m not sure if this is universal for all the PIAs. But for our SIGs and for our working groups, there’s a new policy that’s coming in that your part of that leadership for two years and then you rotate out. I imagine you could go on to leadership in another SIG or working group, or not at all if you wanted to transition out.

And then within the executive committee for the PIA, there’s a two-year transition between the co-chair to the chair and then the past chair. So, that’s the six years you are getting to. But then for communications chair and program chair, it’s a two-year term, but I don’t think it’s an automatic transition to another position. Also, for our student liaison.

Dr Dave Cash:

Yeah, hopefully your students won’t be liaising for six years.

Dr Shana Stites:

Can I do something that’s sort of…

Dr Dave Cash:

Sure.

Dr Shana Stites:

Could I turn around to ask you a question? Just because I’m so happy to be meeting you. You’re such a celebrity in our world.

Dr Dave Cash:

I don’t know about that. But sure, go ahead.

Dr Shana Stites:

Could you help me understand how diversity and disparities work is relevant to your work? You may not engage with it directly, but how do you see it as being useful to the field and useful to what you’re trying to accomplish?

Dr Dave Cash:

Two things come out right off the bat. One is I work primarily in imaging biomarkers. So, understanding how the different imaging signatures look in terms of diversity and disparity is important to understand what’s changing, rates of change, characterizing heterogeneity. Especially if we’re thinking about how, you design clinical trials. Because a lot of what I want to look at is how we can design clinical trials better.

Make them more efficient, get drugs that are actually working to market quicker. I think the second one that’s a big topic is around the role of artificial intelligence and imaging. And do we have training sets that are representative of a larger population?

And are we much like a lot of genomics that are kind of limited to more of an affluent white European ancestry? Is there the potential risk that our artificial intelligence would misclassify things, not do as well on different groups as possible? And then I think just access to imaging.

If I can add a third one here, which is a lot of these drugs are going to require a lot of active MRI scans to assess safety. Maybe some PET scans at some point to assess if people are showing PET scans pathology. Who has access to those scans? What makes them more or less likely to be willing to participate in a scan?

Do they understand what a scan involves? I haven’t been looking at this directly. There are some really interesting diversities London cohorts that are beginning to come online. And I think we’re all interested to look more at the imaging that are coming from them.

Dr Shana Stites:

That’s really exciting and certainly the top three I think, especially being on the fly that. I appreciate your willingness to just do it and do it well. Will you humor me for a follow-up?

Dr Dave Cash:

Sure.

Dr Shana Stites:

So, one of the things that is a topic in our PIA that comes and goes in terms of it’s always there, but sometimes it’s the chatter about it rises up to higher levels, is the difference between difference and disparity. Sometimes there are just differences. And sometimes those differences have negative effects on whatever is important to us.

And we call those disparities. Something is not parallel that should be parallel. One of the challenges we face within the PIA is knowing when it’s a difference and an aspect of diversity just to embrace for being what it is. And when it’s something problematic that we need to lean in and say, “We need to do this differently.”

And where this resonates with hearing you talk about the top three issues is that there’s so many ways in which we vary as humans’ diversity. Not disparities, but the diversity of the human experience in some ways we’re so homogeneous. But in other ways, when you start pushing into biomarkers and measurement, there are so many different ways that we have this natural variance.

What are your thoughts on either diversity versus disparity? Or how you approach the wide number of ways in which we are diverse to figure out where you’re going to focus in terms of developing these biomarkers?

Dr Dave Cash:

Wow. One of the things that I’ve been fortunate to be involved with is some of these more data driven disease progression models that kind of don’t make a lot of assumptions about underlying labels of different people, but just try to cluster the heterogeneity a bit more. And I think that’s a helpful way of doing it in some regards provided that we have a diverse cohort underneath.

Because then, what I like about these models is you don’t apply the labels ahead of time. But then when you look at the clusters, this subtype is this, this subtype is that. Then I think maybe we can look a little bit about disparities there. Because then we’re talking about increased atrophy rate or increased white matter hyper intensity or earlier onset of the disease or the biomarkers.

And see if there is a bit more explanation of what heterogeneity we can see linking it to what could be diversity. And is that cluster itself somewhat of a disparity because it’s showing a more severe disease trajectory? Or is it showing more resilience?

So, I think that’s one place where I’m coming in it. And the second element is the commonality is important as well in some respects. Because as you said, we can chop and change things quite a bit. But ultimately, we need a drug that works across as many population groups as possible.

And this is one of the things that I always get a little bit frustrated about when people look at trial enrichment and they don’t realize that, okay, we’ve reduced our population to 10%. So, you’re going to have a super high screen failure rate. And you’re not going to be able to give the drug to a lot of people because it’s not on the label.

But you’ve done a really good job dropping your variability down. Well done. Those are kind of the areas I’m thinking about. I like that we can go back and look at potential sources of these things. But also, we have to think about the big picture.

Do we have drugs that are generally effective? And then we can drill down and see, okay, are these drugs more effective than others? Do they help predict response or adverse safety events more than others?

Dr Shana Stites:

I see. That makes a lot of sense. That’s so helpful to hear you sort of talk through your thinking and you’re reasoning on the matter. It also brings to bear just how important diversity and in inclusion is. That underlying sample is really the place where you’re starting.

Because otherwise, you’re going to be identifying clusters in homogeneous groups. Or clusters that aren’t relevant to the outcome that you’re interested in. So, that definitely makes a lot of sense.

Dr Dave Cash:

And we can’t measure this heterogeneity if we’re missing 60 or 70% of the population in that regard. So, I’ll finish up. It’s been really great talking. I’ve had a really fun conversation hearing about your research and what your PIA does.

Tell everybody what your PIA has planned, what its aims are for the coming year. And you mentioned a little bit already what you guys have planned for AIC. But are you presenting yourself as well or are other members of your PIA?

Dr Shana Stites:

Yeah, I think actually we have a lot of members of the PIA that will be presenting at AIC. I’ll have some work on social and structural determinants of health. We have a PIA Day that will be going on with this panel talking about the emerging therapies. We’d love everybody to come to that.

We have multiple posters and talks that are going on. And I believe most of them are going to be tagged with the hashtag for the diversity and disparities PIA. So, when the program finally comes out, I would encourage people to follow that hashtag and then you’ll be able to find the listing. I think we have at least 20 posters out there from postdocs.

We have 100 students. There’s a lot of work that’s going to be at AIC. And then for the next year moving forward, we are starting to think about what webinars we’re going to be doing. We’d be interested to hear from people that can always drop us an email on topics or in fact they’re done with webinars and don’t want to hear any more about them.

And we’re also continuing to pull together these review papers and focused commentaries. Those are I think are our big steps for the upcoming year. Thank you for asking. And David, it’s been such a pleasure to get to talk with you.

Dr Dave Cash:

Likewise. It does sound like you have quite a lot planned for the next year. So, we all do it as PIAs. It is time to end today’s podcast. Thank you again for your time today and great conversation.

One final question, just you mentioned how you’re at 800 members and you want to get to two to 3,000. So, here’s your opportunity to pitch to why listeners should sign up to your PIA.

Dr Shana Stites:

To be part of diversity and disparities work. We’re at this really exciting moment in Alzheimer’s disease. And we need to understand how to bring forward these advances in diagnostics and treatment in a way that’s, as you said, is going to optimize them for the most people and the people with the highest burden. And to do that, there’s so many things that we don’t know.

And so, many people that we need to bring to the table that we need all hands on deck. And there’s plenty of roles to fill. Whether that’s an interest in helping diversify these research cohorts that we have going on, working on the design of clinical trials.

Or whether that’s conducting the numerous studies of existing data that are out there to find out how do we set up protocols for study partners to make it as inclusive as possible. There’s so much work that needs to be done. We welcome everybody to join us.

You can do that. You can find us on Twitter. We’re out there. You can go to the ISTAART website and look us up there. You can write to me personally and I’ll help you get mixed up with the group. And we will be at AIC at the PIA evening or the reception that’s going on at [inaudible 00:42:25]. We will be in one of those.

Dr Dave Cash:

It’s Thursday night, isn’t it?

Dr Shana Stites:

What was that?

Dr Dave Cash:

It’s Thursday night, is that right?

Dr Shana Stites:

I believe so. Please come and join us. We’ll be standing there lonely waiting, looking for conversation. So, come introduce yourself.

Dr Dave Cash:

Sounds great. Well, thank you very much, Shana, for taking the time to join us today. And to all the listeners, thank you for listening. You can find profiles of myself and my brilliant guest and information on how to become involved in the ISTAART on our website at dementiaresearcher.nihr.ac.uk and also at www.alz.org/ISTAART.

There is the link in the show notes. I’m Dr Dave Cash and you’ve been listening to the relay podcast from Dementia Researcher and the Alzheimer’s Association. We will be back tomorrow. So, hit subscribe on YouTube or in your favorite podcast app to ensure you don’t miss an episode. Thank you.

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