Closing the gaps in women’s health research

Leanne Kaufman:

From the medications we take to the medical devices used to treat us, it’s shocking to think that sex and gender considerations have often been ignored in the development and prescription of life-saving tools.

Women specifically have been ignored in research and trials, and the difference in the sexes is frequently disregarded in treatment options.

Luckily, there is a body of work now happening across Canada that recognizes the gaps created by a one-size-fits-all approach, and we are lucky enough to have one of the leading researchers in this space joining us today. We’ll be diving into the gaps in women’s health research, exploring the implications of this lack of research, and examining what it means for Canadian women and their families.

Hello. I’m Leanne Kaufman and welcome to RBC Wealth Management Canada’s Matters Beyond Wealth.

With me today is Dr. Angela Kaida, Scientific Director of the Institute of Gender and Health, who specializes in gender, sex, and health research. I had the privilege of meeting Dr. Kaida when she spoke at an event hosted by the Women’s Brain Health Initiative and I’m so excited to have her bring her expertise to us here on this podcast.

Dr. Kaida, welcome. I’m so glad and fortunate that our paths did cross. And now we get to continue the conversation around why, as I’ve heard Dr. Stacy Sims in the U.S. say, “Women are not small men”, particularly when it comes to our health, and why this all matters beyond wealth.

Angela Kaida:   

Thanks so much, Leanne. So happy to be here.

Leanne Kaufman:            

So maybe you can start by telling us a little bit about the Institute of Gender and Health and your role there.

Angela Kaida:   

Sure. Well, thank you, Leanne.

So the Institute of Gender and Health is actually one of thirteen scientific institutes that make up the Canadian Institutes of Health Research or CIHR. So CIHR is Canada, our health research funding agency.

CIHR’s role really is to fund the best necessary research across all pillars of health sciences. So we kind of talk about that as biomedical research, clinical sciences research, health systems and services research, population health, public health, environmental health research.

And so, we really think of research as having the power to change lives overall. And for us at the CIHR Institute of Gender and Health, we have a very specific mandate, which is about fostering research excellence regarding the influence of sex and gender on our health, but also to apply what we’re learning to identify and address the pressing health challenges that are facing women, men, gender-diverse people, boys, girls across the country.

My role is, I am the Scientific Director of the CIHR Institute of Gender and Health.

Leanne Kaufman:            

And I’m so glad to hear that it’s not just the research, but the application of the research because that’s where the meaning probably happens to those of us listening and on the receiving end of all the great work that you’re doing.

So why do you think it’s important? It sounds like such a silly question. But why is it important to study sex and gender as part of research? And maybe you could share with us some examples of where it’s made a real difference.

Angela Kaida:   

Yeah. It’s actually not a silly question. And sometimes it doesn’t seem obvious in academic language. But I think for each one of us, as a person, we understand where there’s value here.

So I’m going to first just start by distinguishing sex and gender because I think there’s so much confusion right now about why do we talk about sex and gender as separate terms.

So in the first place, sex is really a biological attribute. It’s about our chromosomes, our genes, our hormones, our physiology, our anatomy, our reproductive organs and capacity. So those are—both of humans, of animals, we all have a sex.

Whereas gender is really socially constructed. Maybe it’s about how I identify, but it’s much, much more than that. It’s also about gender norms; expectations of our behaviour given our gender; how we relate to each other; what society expects of people of one gender or another; whose lives we value or value less because of our gender.

So gender is a really messy construct. But I think we live it because we are sexed bodies in a gendered society.

And so both of these terms, when it comes to people, are related, but they’re not exactly the same.

So when you asked about, why is it important to study sex and gender in any research, it’s because some of what we learn about treatments, about diagnoses, about vaccines, about cures are affected by aspects of our sex. There’s a lot of examples about this in immunology, in particular.

And some of what we experience is about our gender, so, how we access care; who believes us when we say we have symptoms of pain or depression or mental health challenges; how are healthcare systems set up that might be better able to serve people of different genders or are actually worse at serving people of different genders.

So that’s hopefully a pretty accessible understanding about why sex and gender matter in our health. But it really plays out in the sense of, if most of our scientific evidence base comes from research that has really predominantly included male animal models or male cells or men’s experiences, then what we’ve been doing is trying to generalize those findings to female bodies and to women’s experiences and gender-diverse people’s experiences.

And there’s gaps in that translation. We’ve all experienced that.

So we have data that tells us that for hundreds of conditions, women experience an average of two years of delay of diagnosis for that condition. Because women’s experiences are just so underrepresented in that evidence base.

Leanne Kaufman:            

Well, I mean, you did do an excellent job. Thank you for breaking it down.

And you mentioned that these hundreds of examples where the research on only men has been done and how women get impacted by being delayed in diagnoses and so on. How does it impact actual lifespans? If we’re two years late or a couple of years, whatever the case may be, late in getting diagnosed because we haven’t been the subject of the research and so on, does it have an impact on overall lifespans?

Angela Kaida:   

So this is where it gets really even more interesting.

So what we know is that, on average, women do live longer. So lifespan, women do live, on average, have a longer lifespan than men. And I’ll only speak about men and women in this example because we just don’t have a lot of data around folks who may identify outside of the women and men binary. But that part we know is true.

The interesting part is when we talk about health span, the language of health span. And so women will spend an average of nine years longer in poor health relative to men.

So we might have a longer lifespan, but our health span is worse.

And much of that time that we spend in poor health affects us during what would otherwise be very productive years of our lives. And whether that’s in the phase of perimenopause or menopause or our early years of being a senior, under-addressed health issues, including chronic pain, including depression and mental health, including our higher risk and consequence of Alzheimer’s, lower back pain, various forms of arthritis, those are really compromising women’s health span, our contributions to our families or to our societies.

And these are questions that we need research to help us understand and then, as you said, apply what we learn.

Leanne Kaufman:            

Fantastic. I’m so glad you’re doing this work.

Since you’ve been named the Scientific Director of the Institute or going back previous to you in the role even, what sort of progress can you tell us about that’s been made in this space?

Angela Kaida:   

Yeah. And this is really the work of my predecessors, other Scientific Directors, but I’m so happy to brag about it on their behalf. But I think really, CIHR has been a world leader in requiring all health researchers who are seeking funding from CIHR to talk about the sex and gender considerations in their research, as in, this is mandatory in Canada. So if you are doing research on a new—you’re testing a new cancer drug, or you’re testing new ways to diagnose postpartum depression, or you’re doing research on active transportation in cities, it doesn’t matter. What we are requiring is that if you are seeking funding from the Canadian Institutes of Health Research, you have to consider the sex and gender considerations of your research question.

And then we require the peer reviewers—so within science, peer review is everything. So the peer reviewers are then required to assess, have you adequately considered sex and gender in your research, and include that information on the score, so whether or not you’re going to be funded to do the work you’re proposing.

So that policy has really led to a remarkable increase, as you can imagine, in the proportion of funded studies that do consider sex and gender. So that is progress and that matters.

Now our attention is really turning to, okay, so folks said that they were going to do sex and gender considerations in their research; did they actually do it? Do they publish their findings in such a way that enables us to see the data by sex and gender considerations? Do they interpret their findings sufficiently along sex and gender considerations?

So that is all, I would say, work in progress.

Leanne Kaufman:

And it’s just so hard to believe, as a recipient of the healthcare system, that this is new. Isn’t it? I mean, really, it is quite alarming.

I’ve read that much of your work also considers how sex and gender intersect with societal factors and some of the social determinants of health, as part of what I’ve read in some of your work, what you call “precision medicine”.

Can you explain a little bit more what you mean by this?

Angela Kaida:   

Yeah. So I think this is really exciting. And I think probably your listeners can really connect with the idea of “precision medicine”. We sometimes call it “personalized medicine”.

And so this is really a healthcare approach where medical decisions are tailored to an individual or a patient’s unique circumstances or unique characteristics.

So for instance, if you are a female of a certain age, you have an ancestry background of South Asian, you have a life experience that means that you’ve lived in relative comfort, you don’t have problems accessing safe and secure food or housing, all of those features can bear into what type of care that you receive.

And so that personalized or precision-medicine approach really kind of blows up the one size fits all. Right? It really says to us, we can be more sophisticated than that. We can really examine our data and examine the evidence base to provide more specific guidance on treatment, on prevention strategies, on your actual risk for different conditions based on this data that includes some biology and includes some social considerations.

But we can only do that if we have a scientific evidence base that accounts for those factors. So we can’t get to personalized medicine if we’re continuing to do research that is one size doesn’t fit all—but that kind of obscures some of those really important nuances. But if we can do the research that helps us examine these different factors that matter in a nuanced and complex way, then we can get to that type of personalized medicine that I think we all want and that we all deserve really.

Leanne Kaufman:            

I couldn’t agree more. And so would you consider wealth one of those societal factors?

Angela Kaida:   

Yes. I mean, of course. I think intuitively we understand that and the data shows us that as well.

But the relationship between wealth and health is sometimes a bit more interesting than we think.

So for instance, on an individual level, we know that if you have wealth, I guess is the language that we’ll use, you’re more likely to have good health. You can access healthcare services. You can access health information anytime that treatments require co-pay. That’s not a barrier for you. You can live in healthy neighbourhoods that provide access to active living, all of those things that we know that individual wealth confers to an individual as far as their health.

But what’s also interesting is, it’s not just individual wealth that matters; it’s wealth at a population level and how wealth is distributed in a population. So even living in a very unequal society when it comes to health means that population health is worse than for people who live in a more equally distributed country or society when it comes to their wealth.

So it’s just a reflection that wealth works in many ways on an individual level, but also at a population level in terms of how we distribute access to resources and wealth in a country.

Leanne Kaufman:            

So by way of example then, comparing a country like Canada where it’s a little more evenly distributed perhaps from an access perspective to a model like the US, which may have bigger gaps. Is that what you’re getting at with the population level?

Angela Kaida:   

Exactly. And there’s a lot of countries that we can look at, but that’s such a great—a really helpful example.

So the U.S. spends the most on health as a country, but it doesn’t deliver on population-level health outcomes. So their life expectancy is much lower than you would expect for a country that spends what it spends on health. It’s much lower than what you might expect for a country which is, I guess, maybe the richest country in the world; I’m not sure exactly where we put it nowadays. But relative to Canada where we spend less, but we deliver on higher health outcomes for our population. And that’s because of how I think that health and wealth, partly, how health and wealth are distributed in this country.

Leanne Kaufman:            

Yeah. That’s very helpful.

So for our listeners, I think one of the things we sometimes might struggle with as patients or as family members of patients is self-advocacy. And if this is another tool that we now have to think about how sex and gender may impact the path that we are on, whatever that may be from a health prevention or disease treatment perspective, do you have any tips for everyone about how to be an advocate in this particular area of healthcare?

Angela Kaida:   

Our institute is a national and, I think, world leader in sex, gender, and health research, the importance of the work, how to do it better, how we can apply what we’ve learned, the value of it.

And as we’ve sort of advanced work in this area, it’s been pretty clear that this underinvestment in women’s health and women’s health research needs a really targeted focus. So we really needed to look at, if we know that women’s health has been underfunded, what has that led to?

And so we’ve looked at our own data to find that across CIHR, really a very small proportion of health research funding has gone specifically to female-specific conditions or those conditions that disproportionately or differently affect women, if that makes sense.

So if I can give you—I think, the female specific, we all sort of have an idea of that, of whether that’s endometriosis or ovarian cancer or menopause, perimenopause, et cetera. But there are also a number of conditions that we now know, even like heart disease, that affect women so differently that the symptomology that many of us may have in our minds of a heart attack—you clutch your chest, fall to the ground—are not symptoms that women experiencing heart disease, generally experience.

So we’ve got these conditions that affect all of us, but they look so different in women.

So we’ve been leading what I think of as a first-in-a-generation investment in women’s health research in this country. And that has started with a $20 million investment from the federal government to address areas of high-need underinvestment in women’s health, which honestly is, like, all of them, but, that’s where we started. And then we’ve been building on that with some additional investments of $50 million in other areas of women’s health research, including sexual health, including women and HIV, including stroke, including conditions of long COVID.

So we’re really trying to invest and build Canada’s contribution to women’s health research. And because we have, I think, some of the world’s greatest scientists here in Canada, this has been an absolute joy for me in my position to be able to support these ideas, this creativity, this high-impact work.

But if you asked us, what can listeners do—I think that was coming back to your question. What can listeners do to advocate for themselves, advocate for this work?

I think there’s the obvious answers that I’m sure lots of people will share about staying involved and read more, get informed. Okay. I think we know that stuff.

But I also want to do a plug for participating in research. And so if you are at your doctor’s office or you see a flyer or something comes along your way, you’re thinking, « Yeah, gosh, I’m not sure I’ve got time for that »; participate in research. Because providing your experience, your voice, I guess, your data, your story, to be part of what we’re learning about women’s health in this country is so important. And the more people that we have participating in research, the more diverse the people are who participate in our research, just the richer our knowledge base is going to be to influence better health outcomes for all of us.

So as a researcher, I have to make that plug and encouragement to say, you will learn a lot. You will connect with an incredible health research community across this country. And I think being part of research helps you understand, helps us understand—I mean, the royal us—the value of research.

Leanne Kaufman:            

Is there a centralized depository of the research that’s going on where they’re looking for volunteers, where people could, if they’re interested in participating, either broadly or on a specific topic?

Angela Kaida:   

So there’s no easy way to do that right now. Okay? I’m sorry to tell you and the listeners. There’s no easy way to do that right now.

But one of the things that we have done within the last year is to fund what is called the Pan-Canadian Women’s Health Research Coalition. Doesn’t matter. But the point is to do exactly what you’re saying, which is that there is a lot of knowledge out there. There are a lot of ways to learn more from experts across this country, but it’s convoluted to access.

And so one of the roles of this coalition is to be that central point, is to say, okay, here is the incredible work happening across the country. Here are research opportunities for you to participate in or to be aware of. Here are some leading experts who are doing work in areas that might be really relevant to you personally in your life. Here’s the opportunities to hear from them or read their work or be part of a larger movement.

And so that work is being led by what we’ve called a coordinating centre in women’s health research. And so, as that, they’re developing a website and a repository. So I’ll send you what is currently up there and then it’s a watch-this-space type of invitation.

Leanne Kaufman:            

That’s amazing. And maybe we’ll be able to add the details as they come in to the episode webpage for this episode as well.

Oh my goodness. I feel like I could talk to you for the rest of the day, frankly, because I have so many questions. But we want to be mindful of your time and the time of our listeners.

My last question is typically, if you hope listeners remember just one thing from this conversation what would that be, but, what’s something we haven’t talked about yet that you wish I’d asked you about? Because you just have such a wealth of knowledge.

Angela Kaida:   

I guess health research and health sciences, needs to involve all of us. I don’t think that’s a controversial statement. And if we are involving all of us, not only will our outcomes be better, our science is better and our opportunity for discovery is higher. And as scientists, that’s where we’re really driven. We have big questions that we’re trying to answer and there are so many opportunities for discovery.

We have a new Prime Minister in Canada in Mark Carney and he’s encouraging all of us as Canadians to think in different ways about our role as Canadians in a global world.

And I think one of the things I’ve really come to think deeply about is that investing in women’s health and women’s health research is important for our health, but it’s actually really important for our economy and our economic productivity.

And so there’s a report by the McKinsey Health group. And they have this line that investments in women’s health and women’s health research represent a $1 trillion opportunity in economic potential, driven both by women being healthier and having longer health spans, which we deserve, as well as improving our economic participation and opportunity.

And so I really think, in this moment, it’s not really about, oh, are there opportunities to do more and to do better? It’s like, yeah, there are big-time opportunities. It’s just, who’s going to seize the moment.

And so I hope I can just say to your listeners in all of our different ways and power and influence, we all have a role. And so let’s seize this understanding and really catalyze a huge movement and change in Canada.

Leanne Kaufman:                            

I think everything that you just said, is just so incredibly important to the whole. It doesn’t matter your sex or your gender. The work that you and your colleagues are undertaking is going to benefit everyone and the society as a whole.

And thank you for bringing in the even economic impact at the end of our conversation. Because where my mind went when you started talking about health span versus lifespan was, of course, things like stepping out of the workforce and caregiving and all the things that some of our colleagues at Women’s College Hospital talk about in gendered ageism. So we won’t go down that path, but it’s a nice little segue or teaser into some of the other conversations that we have with some of our partners across Canada on this topic.

Thank you so much, Dr. Kaida, for joining me today. I’ve really, really enjoyed our conversation. And I’ll repeat again just how important the work is that you’re doing and how personally thankful I am that you’re there doing it.

So, thanks for joining us to help understand the importance of this and addressing these gaps in not just women’s health research in Canada, but sex and gender generally, and why all this matters beyond wealth.

Angela Kaida:   

Thank you so much, Leanne.

Leanne Kaufman:            

You can find out more about Dr. Angela Kaida on the Canadian Institutes of Health Research Institute of Gender and Health site and we’ll provide a link in the podcast notes to that, or on LinkedIn. And you can learn more about our friends at the Women’s Brain Health Initiative, whom we have to thank for the introduction to Dr. Kaida at womensbrainhealth.org.

If you enjoyed this episode and you’d like to help support the podcast, please share it with others, post about it on social media, or leave a rating and review. Until next time, I’m Leanne Kaufman. Thank you for joining us.

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