On Diversity in Neuroscience - HIMSS Europe Series with Dr. Sivaniya Subramanapillai

What I've learned is that, aging well is really a privilege and not everyone has that privilege. So it's really important to not put the onus on just the individual to create life choices that facilitate better brain aging.What can we do to the environment in terms of social policy and to facilitate better brain health for everyone? My name is Savaniya Subramanapillai. I'm a researcher at the University of Lausanne.

Hello dear listeners. Welcome to a new episode of our HIMSS Europe Special series on Narratives of Purpose.This week I bring you interviews with two speakers of the HIMSS Women's Health in Focus track from the session titled "Beyond Bias: Redefining Chronic Condition Management".These interviews were recorded in Paris back in June at the himss, the Healthcare Information and Management System Society European Annual flagship event, also considered as Europe's number one digital health conference. For those of you listening to Narratives of Purpose for the first time, my name is Claire Murigande.I am your host on this podcast which is all about amplifying social impact by showcasing unique stories of global change makers who are contributing to make a difference in society. My guest today is Dr. Sivaniya Subramanapillai.Sivaniya is a neuroscientist exploring how diversity shapes brain aging with a focus on sex and gender differences. Using large scale neuroimaging and health data, Sivaniya aims to understand the factors contributing to healthy versus accelerated brain aging.Sivaniya is passionate about science communication and advocates for greater representation in brain health to drive meaningful change.Remember to rate and review our show wherever you listen to your podcasts or simply share your thoughts and feedback on the Narratives of Purpose website using this short bit.ly/arrativesofpurpose, then select the review page. For now, get comfortable and let's begin the conversation with Sivaniya.

My name is Sivaniya Subramanapillai.I'm a researcher at the University of Lausanne as well as the Lausanne University Hospital and my research focuses on sex and gender differences in brain health as we age, with more of an interest also on diversity and how intersectionality influences brain health and dementia risk.

We're actually recording now after the conference. The panel discussion that you were on was titled "Beyond Bias: Redefining Chronic Condition Management".For you as a speaker, being on the panel and having such a broad audience available, what was actually your goal in terms of the main message you wanted the people attending the session to take away from?

I think my goal was to really highlight the importance of intersectionality and you know, I think the focus of the panel discussion as well as the other sessions as well, is really to highlight women's health, which is obvious, obviously very important, and has been historically neglected.But from my perspective, and from the research that I do, we see that when we zoom in even further and look at even subgroups within women, we see that there may be some subgroups who may be more at risk for developing Alzheimer's disease or may have worse outcomes when it comes to faring the disease.So it's really trying to push this idea that it's not just important to look at women's health, but to also look at intersecting identity dimensions that could potentially give us a more clearer understanding of what's happening when it comes to, at least in my case, aging, but just more broadly, health outcomes in general.

It's actually a very important point because, as you say, we take women's health as a whole, which obviously is important, because so far, the male body has been the only reference and the standard to everything that we have almost on the market. Right. Unless it's related to fertility. So that's one thing that I also notice, is that the intersectionality aspect is not always present.Can you perhaps, just for our listeners as well, give us a bit of a sense of what does that mean specifically in your world?You know, you just said previously that some certain subgroups are more prone to develop this disease or even have, I would say, more severe diseases. Can you give us maybe some figures or just a bit of a context?

Yes, absolutely. So, yeah, I'm not sure if I defined intersectionality really well, but it really is this idea that we constitute multiple identity dimensions.We're not just, you know, male or female.It's race, ethnicity, socioeconomic status, migration status, all these factors that intersect in very complex ways to potentially influence our experience of our lives, but also our health outcomes as well.So in the case of Alzheimer's disease, a very common statistic that we like to share is that women have a greater prevalence of Alzheimer's disease than men. It's incredibly important to understand why there might be these sex differences at play.This might be related to hormonal differences that are specific to females that may be contributing to differences in Alzheimer's disease risk. But then when we look at subgroups, there are some subgroups that are also at greater risk.So these are black women as well as Hispanic women that have a greater risk of developing Alzheimer's than white women, for example.So this is where it's really important to not just focus on sex differences, but also these intersecting identity dimensions and how that could so in this case race ethnicity as well as sex and how that can influence brain health outcomes as well as Alzheimer's disease risk.And that's just one statistic, but also there's others that, that suggest that people from lower socioeconomic backgrounds have greater risk of developing Alzheimer's disease as well.So it really points to the importance of understanding biological differences, but also potentially social differences and socio, cultural differences in helping us understand how individuals experience risk.

So how far are we in terms of research in looking into that? A bit more into detail. You know, these are like topics that you hear a bit more and more outside of the medical scientific field, so to speak.Although sometimes I think that I'm biased because these are things I'm specifically looking into. How far do you think we are within that process of including?Because in the end, you know, that was also the main goal of this session at the Congress and this track is to say we have to include not only sex and gender, but look at it even more into detail.

You know, there are some groups that are actively focusing on this, which is, you know, a great start in my case.You know, I think the reason why I was so inspired to really place more attention in this is because the data sets I've been working with are largely participants from these sort of weird populations.So Western educated, they're, they have high resources and so they're really these specialized groups that we're focusing on that we really, where we, where whatever findings that we do have, we can't really generalize applies to other populations. So the statistic that I mentioned in the conference, to me, it's so shocking, which is that we use the UK biobank.It's one of the largest brain imaging data sets. IT has over 500,000 participants and 96% of participants are white Caucasian.So that just leaves the remaining 4% to represent the 20% of ethnic minorities in the UK. So it's quite a stark statistic when you think about it like this. The UK Biobank is, it's such a great massive effort.The fact that we have such a large resource and data set is just so wonderful because we can start to look at these complex questions with a lot of the health data that's available. But unfortunately we cannot apply the same questions to the diverse samples that also need just as much attention.So I think there's definitely a lot more work that needs to be done in terms of addressing a question like intersectionality. We're looking at multiple identity dimensions, right.So the data just needs to be available and so the data sets that are out there, that are publicly available to research researchers, unfortunately don't have a lot of diversity to even begin addressing questions of intersectionality.

But is that something that, you know, the current status of AI can support with?On the panel, the previous panel before yours, they were talking about, you know, even like designing data from, from what we have or from what we understand of, of different populations. Right. So is this something that can be sort of, I don't know if it's the right term, generated outside, or do we really have to collect that data?So basically then the question is a bit twofold. If we have to collect that data, what needs to be done?

From your perspective, that's such an interesting question. I actually never thought about using AI at the start to potentially generate data that is more diverse.The only thing that comes to mind just from my research of AI is that there's issues of bias. And so I guess how do we systematically test bias at the start in these processes?My perspective though, I'm coming from the angle is we just need to collect more diverse data sets. I think one major barrier is trust in the community from underrepresented and marginalized communities.There's been historical transgressions that have been directly directed towards these minority groups and marginalized groups. And so that's created and harbored a lot of distrust towards the scientific community.And so I think one thing that I like to say is just really important to focus on the humanity aspect as well. Like AI is important, but just like bridging the barrier between science and community. And the community sees diverse voices as scientists as well.They tend to also trust, and they may trust the information that's being shared. Another issue which I'm super interested in is also reducing the barriers to access.So for example, MRI technology in itself is not easily available to a lot of communities. So a lot of rural communities, they tend to have to travel hours at a time to get to a hospital with MRI technology.There are some countries that they just don't have as much access to MRI scanners as Western countries.One thing that's been really interesting for me to learn about is this hyperfine low field MRI technology which scans the brain at a lower resolution, but is a lot cheaper than the traditional MRI scanner. It's portable, so you can move it and you can plug it into a traditional plug outlet.And so the idea is to really use technology to address barriers in terms of getting more inclusive data. And what's also really interesting is your question about using AI.This Technology uses like post AI processing methods to increase the accuracy of the of the scans. So the first output of it might be quite grainy and low resolution, but these post AI processing methods actually are quite reliable.And so that's really interesting to sort of think about AI in that sense that you mentioned.

You said that it's also important to have diverse voices representing the science so that the trust can be enhanced. And I had noticed one of your posts, I think it was earlier this year on LinkedIn that you won the FameLab Talking Science International final.And your talk was titled A Recipe to Improve Diversity in Alzheimer's Disease. First of all, congratulations. My question then is how has that influenced the way you also communicate about your work to broader audience audiences?

You know, that process was, it was such a long process because there was the local competition, so in Lausanne, and then there was the national competition and then the international competition and every single stage you had to come up with a different three minute talk. And I thought that was like such a great exercise to really try to practice and hone in on my science communication skills.The reason why I was motivated to do this also because I'm quite a shy person in science communication. I don't think it comes to me very naturally.So it's a very nice way to put myself out there and try to be accessible also, you know, engaging with the community, communicating the facts as well.I wish it was integrated more closely in the scientific curriculum because it's oftentimes we've published our papers, but then that's kind of the end of it, you know, and it's.I think it's really unfortunate because we're missing that translation aspect which is just, you know, trying to communicate our work to broader audiences.

My last question now is more of overall, perhaps you've kind of answered it, but maybe you can give another twist to it. It's been now two years I've been watching the women's health space more broadly. Right.Not necessarily femtech or any other, you know, specific areas, but since last year there was a couple of reports that came out, like with McKinsey and the world Economic Forum and Springboard, and they're basically making the case for making the business case for women's health.Do you think from where you are right now in terms of research and the work you've been doing, that this might be in some sort of inflection point, like we are going beyond just awareness and maybe some change is going to happen?

I am hopeful from my perspective, you know, when we do research.It's not just for translation in terms of science communication, but it's also to facilitate community change as well, you know, so I'm hopeful that different organizations, not just a scientist pushing this case, but also like business organizations pushing this case, it just adds a level of validity to what we've been saying all these years. Yeah, I think, you know, from.From my angle, I'm hopeful that, you know, in the future, we're not just communicating our work to the broad audience so that it's on them to kind of make life choices that support their brain health, but we're also thinking about how we've set up our social environment to facilitate brain health.And it's been very clear from the research that I've read that not everyone has the same sort of environment, social or physical environment, to facilitate that brain health. And what I've learned is, like, aging well is a privilege, and not everyone has that privilege.And so it's really important to not put the onus on just the individual to, you know, create life choices that facilitate better brain aging, at least in my case. But it's also to say, okay, what can we do to the environment in terms of social policy and to facilitate better brain health for everyone?And so that we're not leaving behind those who have historically been left behind.

So to conclude, what would be maybe one word of advice, something you would recommend to whoever is listening in terms of, you know, either personal brain health? But also I'm thinking maybe younger people, you know, who might at some point also be caring for elderly parents. Do you have any recommendation in terms of how they should maybe find information or how they should interact with healthcare professionals?

Yeah, that's. That's a great question. I think it's very important to advocate for one's own health and to advocate for your family's health.And sometimes we see doctors in lab coats or scientists in lab coats, and we tend to get intimidated. I'm also a scientist, and that still intimidates me to see a doctor come into a room and you feel nervous to ask questions.But it's your health, and you have every single right to probe and to ask questions and to really understand what's going on. What are the best strategies moving forward? I'd also say social support is incredibly important. It's not just.Just from the angle of brain health to create communities where you feel seen and supported, but also when you're caring for elderly parents or caring for people with illnesses, it can be a very lonely process.And there is research that shows that caregivers experience greater levels of stress and are also at greater risk for chronic conditions or later in their life.So it's really important to take care of oneself as well and to make sure you're finding the necessary social support as well as the resources that are available through the hospital, hospital and the government to kind of reduce, if possible, the burden on the individual.

Thank you so much.

Thank you.

If you wish to follow Dr. Sivaniya Subramanapillai's activities, be sure to connect with her on LinkedIn. As always, the link is available for you video in the show notes. I also recommend you listen to episode 76 of our 2024 Women's Health Series featuring Ann-Marie de Lange, the principal investigator of FEMILAB in Lausanne, the lab where Sivaniya has been carrying out her research. Thank you so much for taking the time to tune in today.Join me again in a couple of days for the second episode featuring another speaker of the Women's Head Health Track session titled "Beyond Bias: Redefining Chronic Condition Management".I will speak to Dawn Adams, a midwife who works with diabetes advocacy groups, researchers and charities to identify and address the specific needs of those living with diabetes across different life stages. Until then, take care of yourselves, stay well and stay inspired.