Media briefings: Ask Ontario's doctors

Ontario’s doctors speak to the media about issues affecting patients and the health-care system in Ontario

Falling behind. Personally, through my work on the Black Scientist Task Force on CO 19 vaccine equity, the lack of race-based data delayed the recognition of the increased exposure and deaths in those who identified as Black, Indigenous, and people of colour. Countries like the UK and the United States systematically collect race-based health data, and they use it to inform health policy. That data has been essential in identifying the system where it fails Black women, particularly in reproductive and birthing care and in developing targeted solutions.

In the United States, Black women are nearly three times more likely to die from pregnancy-related causes than white women. We do not know the exact number in Canada and that uncertainty is part of the problem. But what we do know points to a similar troubling trend here in Ontario. A recent study found that Black women are overrepresented in maternal deaths in Ontario. Maternal mortality is a core measure of population health. It devastates families and communities and in many cases it is preventable. The same patterns appear in cancer care.

Limited evidence shows that Black women in Canada are less likely to receive pap smears and mammograms compared to other groups. And Black women from sub-Saharan Africa are less likely to be screened for both cervical and breast cancer. Because Canada does not consistently collect race-based data specifically related to cancer rates and screening, we can't clearly identify the gaps or how to best close them.

Organizations like the Canadian Cancer Society point to barriers facing racialized communities, including Black Canadians, such as a lack of culturally relevant care, systemic bias, and reduced access to trusted health information. We also know what does work. Evidence shows that culturally sensitive outreach and screening programs significantly increase participation among Black and immigrant patients. So talk to your doctor about screening. Ask questions. Make sure you're getting the preventative care you need. We also need to begin to analyze why Black women are receiving a lower standard of care.

Collecting race-based health data is not about division. It's actually the opposite. It is about visibility, accountability, and better care. If we want a health care system that truly works for everyone, Canada must start measuring who it is failing and why. Because without this data, inequity remains hidden. And Black women's lives depend on us finally measuring what we have ignored for too long.

I'm so excited to be joined by my other speakers on this briefing call today. I'm going to start by introducing my speakers one by one and they'll give you a little bit of a synopsis about what they're seeing, and then we'll open ourselves to questions and we'll really break down the barriers to healthcare for Black women and why they persist.

First, we have Dr. Cynthia Maxwell, vice president of medical affairs at Women's College Hospital and maternal fetal medicine specialist at the University of Toronto. She's amongst a few physicians who are researching the connection between a lack of race-based perinatal data and healthcare inequities for Black mothers and their infants in Canada. Dr. Maxwell, please. Thank you.

Thank you very much, Dr. Abdurrahman. It's a pleasure to be here and to bring light to a very concerning issue in the pregnancy and perinatal space. I am going to share with you some of the background and history related to Black birthing women and gender-diverse people and then bring us to the present to explore Black birthing in Ontario and in Canada. As you mentioned, for decades we've been relying on American pregnancy health data to inform our understanding of pregnancy outcomes in Canada. And it's not clear if that information is directly applicable to our populations given our distinct history and distinct trends in the diaspora of Black people across North America.

The US has the ability to track this information for pregnancy outcomes because it does have a systemic approach for monitoring and tracking severe maternal morbidity as well as maternal mortality. And as recently as 2023, the Centers for Disease Control in the United States reported that Black maternal mortality rates had increased from 37 to 50 deaths per 100,000 live births, meaning that Black women are three to four times as likely to die in childbirth compared to other racial groups. So clearly, these data represent a worrisome trend.

These data are brought more into focus with some of the tragic stories we hear in the news, such as the death of US athlete Tori Bowie a few years ago, as well as the severe complications that were shared personally by athlete Serena Williams during her pregnancy and birth journey. With the availability of data that is disaggregated by race, countries like the United States, like England, and other jurisdictions can analyze the causes of those maternal deaths, which can be related to pregnancy itself or sometimes to other causes. You can track then regional trends in these complications. And this creates the opportunity to introduce things like practice guidelines, quality assurance initiatives, and public policy to drive prevention and help save mothers' lives.

So where are we in Canada? Within the last five years, the Society of Obstetricians and Gynaecologists of Canada, working with many partners in the perinatal clinical care space and research in public health, as well as leaders in the Black health space, have established a series of national summit events to raise awareness and educate on maternal mortality for all Canadian mothers and birthing people with the goal of establishing a national, finally a national reporting system for maternal mortality. And we call this an obstetric surveillance system.

In the interim, we are slowly starting to learn more about the pregnancy outcomes in Black communities in Canada. Last year, for example, Professor Julia Moravac, in collaboration with myself and other members of our research team, published a scoping review on Black maternal and neonatal health in Canada. After reviewing the best available data which included six retrospective cohort studies, the conclusion was that Black race was associated with higher rates of preeclampsia, or hypertension in pregnancy as we call it, gestational diabetes, and inadequate gestational weight gain. In terms of pregnancy outcome, Black race was associated with higher rates of miscarriage, preterm birth, small-for-gestational-age infants, as well as neonatal death.

Fast forward to 2024, the Ontario Better Outcomes Registry and Network, also called BORN, reported, excuse me, on maternal mortality from a national registry dataset. And that showed that the maternal mortality rate in Ontario was 17 deaths per 100,000 live births. And although the data in this study were incomplete in terms of racial identity for mothers who passed away, the study did show that Black people were overrepresented for deaths that occurred just after as well as remote from birth.

A subanalysis of these data was reported last year looking specifically at the group of 20 Black women who died related to pregnancy over a 10-year period. And we learned that for the deaths occurring soon after birth, cardiovascular and hypertension, so high blood pressure disorders, were the most important causes. Maternal death in Black people was associated as well with material deprivation as well as the lack of a first-trimester prenatal visit. Here we have, I think, the first signals that some of these deaths are preventable and that the way forward will be through improvement in quality and cultural safety in pregnancy care as well as environmental and health system solutions.

So while the data are imperfect, they highlight the tragedy of social and structural determinants of health and the impact these have on Black birthing people. Importantly, following the publication of this Ontario-based data, our provincial registry and national organizations have committed to working with Black communities to create, analyze, and report this information in a culturally safe and respectful manner going forward.

And I would like to highlight the important work of the Black Reproductive Working Group, founded by Dr. Mubi Tundias, Dr. Carlen Wilson Mitchell, myself, and others across many disciplines who work in partnership with the Black Physicians Association of Ontario, the Black Health Alliance, and the Black Physicians of Canada, as well as community-based organizations such as Mino Care, and together we're going to find the answers to help change the outcome for Black birthing people. Thank you so much.

We're also joined today by Dr. Modupeola Aminu. Dr. Aminu is a breast surgical oncologist and general surgeon at the Scarborough Health Network and she is the current president of the Black Physicians of Ontario, the BPAO. She will shed light on the barriers Black women experience in accessing preventative care that could be behind the lower rates for breast cancer screening. Dr. Aminu, please. Thank you.

Thank you very much, Dr. Abdurrahman for having me today. Good morning to everyone and I'm really grateful for this opportunity to speak on an issue that does require urgent and sustained attention, which is the underscreening of cancer among Black women and gender-diverse individuals in Ontario, and particularly focus on cervical, breast cancer, and as we're seeing now, the rise in colorectal cancer. As Dr. Abdurrahman has said, my name is Dr. Modupeola Aminu and my focus is in surgical oncology and I work in Scarborough.

So we can say that Ontario organizes publicly funded screening programs for breast, cervical, and colorectal cancer. So on paper, this does reflect our commitment to one of the great ideals of Canada, of universal health care. But we know that universal coverage doesn't necessarily mean equitable access and it doesn't mean that you're going to have equitable outcomes. When we examine Ontario's own cancer screening performance reports, we see clearly that there are inequalities. Participation in breast and cervical cancer screening is lower among people living in neighbourhoods with higher deprivation of income and also having higher ethnic concentrations, areas where new immigrants come, and many of these areas include Black and racialized communities. These communities also have a lower rate of follow-up after abnormal screening results. And this tells us something that's really important, that this gap is not just something we see in papers or theoretical. It is something that is measurable.

So the importance of screening is that we want to catch cancer that is preventable. For example, cervical cancer is one of the most preventable cancers. With regular HPV testing, with vaccinations, and appropriate follow-up, we can detect precancerous changes long before they become life-threatening. Similar for breast cancer rates, survival rates are significantly higher when the disease is detected at what we call atypia or stage zero, so pre-invasive cancer. And often these are detected with screening mammograms. We have data extrapolated from the US and the UK and it shows that Black, Latine, and Asian people have more aggressive disease and are diagnosed at least 8 years earlier before their white peers, and our screening intervals do not reflect these differences that we see.

We know that when screening is delayed or missed, it means diagnosis at a later stage, which leads to more aggressive treatment that maybe doesn't necessarily affect your mortality but does have significant morbidity associated with it. It increases physical and financial burden. One of the common questions patients ask me when I say, "Okay, this is the treatment you're going to need, chemotherapy is going to be part of your treatment," one of their first questions is, "How am I going to pay the mortgage?" And that's not something that I have an answer for. And so this is something that we also have to keep in mind when we're talking about why screening matters. And also we know that it can potentially mean poor long-term survival.

Ontario's colorectal screening program, for example, recommends colonoscopy within about 8 weeks from what we call an abnormal FIT test, which is just a test that detects precancerous lesions using stool samples. But delays that are beyond recommended timelines can lead to missed opportunities for early intervention. And we know that early detection saves lives, but only if access is timely and consistent. Oftentimes for something like the Ontario screening program, you need a family doctor to be able to give you the screening test. We know that 2.5 million Ontarians do not have a family physician. And this is higher in neighbourhoods with higher concentrations of new immigrants, Black, and racialized communities.

So in terms of screening rates, we know that breast and cervical screening participation declined during the CO 19 pandemic and has now partially recovered. But we know cervical cancer rates had already been trending downwards even before the pandemic started. And people in neighbourhoods with higher ethnic concentrations had a lower screening participation and lower follow-up rates. It's important that we know that Ontario's screening database does not routinely collect race-based data, which means we don't actually have comprehensive provincial-level information specifically for Black women and gender-diverse individuals.

However, we do have some community evidence that fills in part of the gap at Taibu Community Health Centre, which is in Scarborough, Malvern, a center that serves predominantly Black, uninsured, Francophone, and immigrant communities. They noted that their baseline screening rates in 2012 were far below the provincial average. Their breast screening was about 17%, colorectal 18%, and cervical screening was about 54%. So they were able to create culturally tailored quality improvement initiatives using an Afrocentric approach, which included providers doing audits, patient outreach through peers, education, and community engagement, and those numbers increased dramatically. Their breast screening offered rose to 70%. Cervical screening ran to 70% as well. So this tells us something powerful: that disparity in screening is not inevitable. It is responsive when we have the right intervention.

I laid out some of the reasons why we have disparities. One of the main ones is access to primary care. Your ability to screen is strongly linked to having a regular primary care provider. People who are consistently not attached to care are significantly less likely to be screened on time. We also have structural barriers to screening, like transportation. I work in Scarborough. A majority of my patients rely on public transit. Our public transit is continually being changed and decimated in these neighbourhoods. And so if you have to take three different buses to get to a screening, that becomes a barrier for you to actually want to do the screening. Childcare is also an issue. We have, you know, the $10-a-day daycare program, but for some families that is still quite a lot of money to be able to have adequate childcare. Then there's an inflexible work schedule. Many people are working hourly jobs. And so for them to take half a day off work unpaid is quite a lot. And also just navigating the referral system that for us physicians we also find daunting, but imagine what it is like for the people that we care for. So knowing that we have a free healthcare system and free screening doesn't mean that it's frictionless or that it's accessible.

We can't also leave out the systemic racism in healthcare. We have to acknowledge the impact of systemic racism. Often, Black patients will discuss experiences of dismissal, poor communication, bias, and all this discrimination erodes trust in the healthcare system. Screening is a preventative measure, but it requires people to engage when they feel well and when they feel safe. If the trust is low, the engagement drops. Lower participation and lower follow-up in neighbourhoods with higher ethnic concentrations are a signal that there are deep structural inequalities.

As Dr. Maxwell also mentioned, without consistent race-based data collection, disparities remain partially obscured. We can't fix what we don't measure. So, what can we do to help close the gap? The first one, something that the OMA has been advocating for, is to improve primary care attachment, ensuring that everyone who is born has consistent access to a provider. This will dramatically increase screening rates as they're getting older. Expand what culturally safe community anchor programs are, such as the one at Taibu, where that experience shows that an Afrocentric approach and culturally tailored interventions do work. We also have to make sure that screening has to include timely follow-up after abnormal results. And we need to collect and use race-based data so we can use equity for our measurements, and then we also need to just extend our practical solutions, so extending hours that patients can have screenings, that patients can see providers. Cancer underscreening amongst Black people in Ontario is not about individual choice alone. It reflects how the systems are structured and how trust is built or can be broken. Ontario has strong screening programs, but strength has to also include equity. What I would like to leave is, when we have culturally responsive care and it's implemented, participation improves significantly, which means that we can close the gap and by closing this, we end up saving lives. Thank you.

Thank you so much, Dr. Aminu. At this point, we're going to open up to questions from the media. I encourage any of the journalists who are joining us today to please put your questions into the chat box and then I believe Mirina will be navigating us through the questions today. So over to you, Mirina.

Hi everyone, my name is Mirina Troleach. I'm with the OMA media relations team and our first question can go out to all the panellists, and we'll start with you, Dr. Abdurrahman. So the question is: Do you have any examples from your patients you can share that shed light on the challenges facing Black women with accessing specialist care, maternal and neonatal care, and cancer screening? Thank you.

Um, this is a great question and I do have examples, you know, in terms of the barriers, and I think this goes to what Dr. Aminu was talking about where unfortunately we see a disproportionate amount of those who identify as Black or otherwise racialized having a harder time accessing primary care, a family doctor, and so not being able to access the screening. You know, as an allergist, you know, I am working in a very small area of medicine, but I recall, especially post-pandemic, I was seeing a lot of different patients again in the office in person, and I remember one of the patients I saw and she said, "Is there any chance you could actually provide me with a pap? Because I don't have a family doctor, it's been so difficult, and I know that I need to be screened." And she was worried and she was concerned that she was missing out on her screening, which was true.

And unfortunately, you know, I'm not the right doctor to provide that service, but you know, she felt safe. She said, "You know, I just can't find someone." And you know, she was this Black woman. I said to her, I'm like, "Okay, you know what? Let's, let me give you some of the resources we have." Thankfully, the BPAO also has some resources in terms of physicians and other physicians we had in the area to help link her. But it was that moment where, you know, she said, "I just, I feel comfortable. This is a safe space." She wanted to ask because she knew she was missing the service. And so, we worked together, helped connect her with a family doctor so that she can get her screening. And you know, she just said to me, "I just, I feel that you understand why I'm asking you even though this isn't your area, but I just wanted to ask just in case that you do do this, because I know that I'm in need of this."

And I, you know, that sticks with me because it's that moment where you're in a safe space and you just want to ask, and that's why I ask everyone, you know, if you're in these relationships with a family doctor, to ask these questions. And I said to her, "Let's get you linked up." And that was, you know, how I could help. But you know, in that moment, someone really just chooses to reach out and when they feel safe, they will ask. And it's important for us to create these safe spaces because that's one of the biggest challenges, is to have the space where you can ask, "Should I be getting this screening? Where can I get this? Can you send me to the appropriate place?" So having those situations and having these areas is so important. I'll pass it over to Dr. Aminu.

And then, so you know, I definitely have stories of my patients in terms of accessing screening, but I actually want to share my story of the issues and the medical anti-Black racism and fatphobia I faced when I was having my child in 2020. I definitely felt that, and this, it was interesting because I had been very terrified of giving birth because of Serena Williams' story, and there was somebody else in the States just maybe about a year before. And so I was very scared of, you know, what could happen when I'm going to give birth. So the joke was my birth doula was my cousin who was an OB/GYN resident, and so she was there with me also, and the whole entire time my pain wasn't managed properly. I ended up having to have three epidurals before I was able to find any sort of relief. I was not being progressed, and I actually heard a comment very early on—I was induced—that, "Well, you know, she's not going to be able to push anyways, so she's going to be a C-section. So what's the point of increasing her Pitocin?" And I heard that, my cousin heard that, and we both looked at each other like, "What?" And you know, she and I actually understood what it's like. At that moment, I was not a doctor when I was giving birth, I was a patient. I felt very vulnerable, and I was grateful to have Abigail there with me, and she was the one who was advocating for me.

And you know, for me, when I reflect on it, part of that was there was the presumption that, you know, I'm over 40, I exist in a heavier body, I'm a Black woman, and that these were the things that were going to happen. And, you know, I felt proud that I did not go to a C-section. I was able to deliver him, and I pushed him out in about 30 minutes. So, I felt very proud of that. But during the process, I really got to witness firsthand just how, like, the anti-Blackness and how insidious it can be. And oftentimes people are like, "Well, how do you know it's because that you're Black or because you're fat?" I'm like, "Well, I've been both of those things for a majority of my life, one of them for all of my life. And you know when someone is treating you differently based on those things." And definitely, you know, when speaking to my OB/GYN who did come in to deliver me, you know, she had been getting messages about, you know, "She should just go to C-section." She's like, "Why? She's doing fine. Baby's doing fine." And so for me, that actually really galvanized my advocacy when it came to making sure that people who look like me, people who come from underrepresented communities, who are lower income, that they also have advocates when they're going through health challenges or just delivering a baby, which is not a challenge. Dr. Maxwell, do you also want to comment?

Thank you for sharing, Dr. Aminu. Yes, absolutely. I'm just acknowledging what you've just shared and how powerful that is, and I'm sorry for all that you experienced and hopefully together we can change that for others, right? I have all sorts of stories and experiences in the birthing space. A couple that stand out, I think, touch on some of the recurrent themes I think you hear across sort of the pregnancy as well as the cancer screening issues around cultural safety and culturally appropriate care. I do remember a patient who came in after giving birth who had a cesarean birth and had a clear and obvious wound infection. And you know, for those of us with melanated skin, sometimes detecting a wound infection is perhaps not as easy or not as readily recognizable. And so we had a look. Clearly, it was an infection. Needed some antibiotics so she could get back to her newborn and carry on with recovery from giving birth. What was interesting, though, in the conversation with her was that she said, "I spoke up repeatedly. You know, I told people at the hospital, I told, you know, healthcare givers that I think something is wrong with this incision." And folks looked at it, they said, "Oh, it looks okay. It's not an infection." Um, so this is a person who clearly tried to advocate for themselves, did speak up, and was repeatedly not listened to. So the diminishing of Black voices, not being heard, not being listened to.

And then also, I think for the healthcare workforce, having the knowledge and understanding of how to make a diagnosis when, you know, all of your education for recognition of skin infections was probably in people who didn't have melanated skin. And so, you know, you may not have that training or that experience. And so it is also on the educational system to ensure that our medical learners and physicians and other healthcare givers in the future will have that education, that experience, to provide that specific kind of care.

Another story, I think, that speaks to some of the issues around the severe outcomes, so the maternal morbidity and mortality, is a story that was shared with me by a midwifery colleague and professor who spoke of a Canadian woman who had given birth prematurely. So prematurity, I mean, it was something that occurs disproportionately in our Black communities. And she was visiting her preterm baby in the neonatal intensive care unit and started complaining of pain, so sort of upper abdominal chest pain, and told the clinical staff around her that, you know, she was having these experiences. And so this individual went on to die of a thromboembolism, so a blood clot that went to their lung, and this was in, you know, in hospital, in a care setting. And so, so very tragic.

It does recall those stories we hear in the media, particularly from the United States, the athlete Tori as mentioned, who had some complications related to pregnancy that may have been a factor in her passing. So the themes of, you know, dismissing Black voices, not being taken seriously, gaslighting I think is another term sometimes we use in this space, these are really factors that contribute to these kinds of outcomes. They come through in these stories, and I think they come out through the data that we've been discussing today.

Great. Thank you so much, Dr. Maxwell. We have another question for you. This one is asking: What impact does the lack of race-based health data in Canada have on public health?

I think as we've said a few times already, you know, what we don't measure, we can't really change or we can't really address. I'm struck by the linkage between some of what Dr. Aminu discussed and what I think about in the perinatal space. You know, what I didn't mention, by the way, is that in the Ontario data for Black mothers who die in and around pregnancy and giving birth, for those who die more remote from the birth, one of the major causes is cancer. So young, you know, young birthing people who've just given birth and then within a year of that birth, they pass away from cancer. And so some of this must be related to screening and diagnosis. We have a publicly funded healthcare system, and yet access continues to be an issue. So whether that is identifying a clinician who can provide the care to you, accessing the care, and then it's not culturally appropriate for you or you're not heard, or the education has not been such that certain features of your clinical presentation can be identified.

So the lack of this race-based data holds us back. It puts us behind other countries, for sure. And we are not able to identify those regional trends, those health trends that exacerbate certain conditions and allow early recognition of situations that can progress to severe morbidity and in some cases mortality for our Black birthing people. And so the data that we need will really inform not only the healthcare system, but it'll inform our policymakers about the structural and social determinants as well that we have to—I can call that racism. Those are the issues that we have to work on at a systems level, and we can't do that without the actual data. We can't rely on data from other countries. We must inform our work by data on Black Canadians.

Thank you, Dr. Maxwell. This next question is for Dr. Aminu. Can we really say Canada has universal healthcare given the issues you spoke about on cancer underscreening among Black women?

So, I would say Canada, Ontario, we're universal in the sense that if you need hospital care, core physician care, that is publicly funded. And Ontario has organized screening programs that exist province-wide. But universal coverage does not equal universal access. I'm someone who grew up in the small town of Wingham, Ontario, 3,000 people. And for many people in rural communities, more rural than that, access to screening is very challenging. It requires transportation to come to get screening. We know that for cervical, breast, colorectal access, screening access still depends on having a regular primary care provider, getting timely follow-ups, navigating a referral system, and you know, sometimes you become very Toronto-focused. But outside, when you're in a rural area, what we've done in terms of specialty care is that we've siloed them, that you know, this region, this hospital is what's going to be focused on XYZ. How does that affect those who have to travel four or five hours to get their rectal cancer removed? That becomes a bigger problem.

And so, you know, we talk about navigating referrals, transportation, time off work, and also just feeling safe and trusted in a clinical setting. All of this can be unevenly distributed. Our analysis notes that Black and immigrant populations are underrepresented in regular screening despite the fact that we have publicly funded care. So this points out that this persistent gap in race-based data collection makes it harder for us to understand how these inequalities are playing out and how to fix them.

Thank you, Dr. Aminu. This next question is for Dr. Abdurrahman. You mentioned there was a discrepancy in disease outcomes for Black people and people of colour during the CO 19 pandemic. How would race-based data collection during this time have helped to close those gaps?

Thank you. The way that this would have actually helped close the gaps would have been by sounding the alarm earlier. Many of us who are working in the healthcare field were raising the alarm saying we're seeing disproportionately more Black people, more people of colour, more people who identify as being Indigenous in terms of being sick and actually dying from COVID, but it wasn't being collected. So it was hard when we were trying to advocate to the government to help direct the resources to the populations with the greatest need in terms of vaccines, in terms of education as to why the vaccine was important and what it would help with. So that would have moved us faster if that data was there versus us having to just continually raise the alarm. It would have been picked up even on the side of the screening looking at the trends.

Because we were often challenged when we raised this: "Well, where are you seeing this? How are you seeing this?" And we'd say, "You know, it sounds anecdotal to you, but that's just because it's not being specifically marked down in the demographics from the hospitals." But as the physicians who are seeing the patients in hospital, who are seeing those who are dying, we were seeing these disproportionate numbers in terms of who was affected. This would have led to faster changes in terms of health policy and faster movement in terms of moving vaccines to the populations who really needed it to be at the forefront of getting them. So it would have just changed the trajectory and we would have lost much less of our populations who identify as Black, Indigenous, and people of colour, and it would have led to fewer deaths in these groups.

Thank you, Dr. Abdurrahman. This next question, we got another one for Dr. Maxwell. How does healthcare provider bias, whether it's conscious or unconscious, impact Black women and their infants?

It's a really important question. I think that there are so many examples in the medical literature that demonstrate this issue around unconscious versus conscious bias, and Dr. Aminu alluded to this as well in her story around unrecognized or under-recognized pain. So when Black folks are discussing their symptoms and describing pain, it's not taken seriously, and these are, I think, related to historical tropes that somehow Black bodies experience pain in a lesser manner than others. We know in cancer screening as already mentioned, in cardiovascular care—heart care for heart disease—that even with well-established and internationally recognized guidelines, those guidelines for care are not always applied appropriately in the setting of Black people.

And so overcoming bias is not easy. You know, part of it is certainly education. But I think that when we also establish the research that drives changes and innovation in our care, I think it's really important that Black health leaders and members of the Black community, people with lived experience, are active participants in this research. And I mean, I am happy to say that this is changing and we are seeing improvements in engagement with Black communities in research, particularly in nationally funded areas.

And I would like to highlight two that are related to Black maternal health and safety. One of them is led by Dr. Isabelle Malham out of Quebec, and it is a CIHR-funded hub grant. So the Canadian Institutes of Health Research has a number of hub or network grants to support women's health, and the study that she leads and that I collaborate with her on is really around knowledge mobilization to address pregnancy-related near-miss events and deaths, and to directly address some of the issues that we've talked about today. And I think what's important is that there has been deep and early engagement with Black communities with Black health experts to co-develop this work.

Another example is led by a midwifery professor colleague, Dr. Sarah Vedam, from British Columbia, and in her work, which is also supported by one of these network hub grants, it looks at justice and equity in perinatal services. And again, there is this deliberate and intentional co-creation with members of the Black community, with individuals who have lived experience in these areas. And I think the quality of the data that we will have around Black perinatal health will improve and will be relevant to our communities and actionable as we go forward.

Thank you, Dr. Maxwell. This next question could probably be posed best to Dr. Maxwell since your research is around this, but anyone can weigh in on this in terms of their specialties. But the question is: Why aren't we collecting race-based health data?

Okay, I'll start, but I think others will have some thoughts about this. Reflecting on that question, you know, I think historically in Canada, there maybe has been a sense that we don't have racism or that somehow it doesn't exist to the same extent as it may in other areas. And you know, we know that's not true, and it's just better to recognize it, name it, and then start to address it. I think that the notion that racism somehow doesn't exist or didn't exist can lead decision-makers to say, "Well, why do we need to collect data that is disaggregated by race if we don't actually think we have racism?" So I think that there are some historical roots there that explain part of this—resources, the will to collect this data. It's more work. It requires more resources and it's not easy to do because it has to be informed by the community. Nothing about us without us. You know, Black people need to be at the table when decisions about what to collect, what data to collect, how to collect it, how to analyze it, how to report it, and how to share it back to the community are made. This all requires deliberate effort and additional resources to be successful at. So those are my thoughts and maybe we can hear what others think.

Go ahead, Dr. Aminu.

I think I would probably echo exactly what Dr. Maxwell said. Not sure what else to add to it is that there's a reluctantcy from a province-wide or Canada-wide level to do it, but we have systems to collect it. Like, you know, we use Epic in Scarborough, and on it, it asks your language, asks your background. And I do think that part of it is becoming more comfortable to say that, like for me, I am Nigerian, you know, to say, "I am Chinese." Like, we're comfortable asking people what language they speak, but people will be trying to describe someone and I'm just like, "Oh my god, are they Black, are they white, like what are we talking about here?" And so I do think there's a hesitancy, that people don't want to say those things, not realizing that noticing someone is different is actually a positive because it means that you know that they might have a different outcome. We should not treat all people the same. We should treat them according to what could be a risk factor or what outcomes they can possibly have.

Thank you. I think a lot of it has been said, but I would say that for anyone who's ever said, "I don't see race," that that is actually some of the most dangerous statements for people who are racialized. You know, there's this thought that in Canada we don't see race, everyone is treated the same, but it's not. And race is not a determinant of health, but racism is. And the system and the structures that be do have that built within it, unfortunately, and so people who are racialized are having different experiences. So the way we look at other risk factors, we have to look at that and we have to talk about it. And that's really uncomfortable for people, but we need to sit with our discomfort and do what's best for our patients. And that's why it's important to collect race-based data. And that's why people are uncomfortable about talking about it. But just because it's uncomfortable doesn't mean that you walk away from something.

I think currently we're probably going to—did you have another question, Mirina, before—

No. Yeah, I was just going to throw it to you to wrap this up, please.

Thank you so much. I wanted to say thank you, Dr. Aminu. Thank you, Dr. Maxwell. Thank you for sharing what you've seen. Thank you for your personal story, Dr. Aminu. Honestly, you know, we each have stories. We are doctors, but we're also patients in the system. We see patients. We see the importance of this. And we see the importance for people to also address things that can be uncomfortable. And this is important for the future of our healthcare system. We're so happy that you joined us today to talk about this. We hope that this leads to further conversations and to further changes in health policy. If you wish to ask us any further questions that we didn't get to, please reach out through our media team through the OMA. We're also happy to take anything further. Thank you so much for joining us today and thank you to our speakers today. Thank you so much. Thank you so much for having us.

Inequities in Black maternal health care and cancer screening

February 2026 - This briefing outlines how gaps in race‑based health data contribute to poorer screening and higher pregnancy and childbirth risks for Black women in Canada.

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