Tag Archive for: women’s health

Addressing Stigma and Inequities in Postpartum Urinary Incontinence Research

Interviewee: Jordyn Cox, Masters Student, University of Alberta | Authors/Editors: Romina Garcia de leon, Janielle Richards (Blog Co-coordinators)

Published: January 24th, 2025

 

Can you tell us a bit about your research? 

Currently, I am focusing on stigma and the lived experiences associated with postpartum urinary incontinence (PUI), and how it impacts health-seeking behaviors, such as seeking healthcare provider support, physical activity, and accessing social support. PUI is the unintentional leaking of urine that can happen after giving birth due to weakened pelvic floor muscles or other changes from pregnancy and childbirth. This condition affects approximately 33% of postpartum women, but it remains highly stigmatized and is rarely discussed, leading to many mothers feeling isolated and ashamed which leads to a lack of accessing care. Despite its prevalence, PUI has a significant impact on mental health and quality of life, yet research addressing its stigma and the barriers it creates—especially for racially diverse populations—remains limited. A key focus of my work is exploring whether racially diverse individuals face unique barriers or experiences compared to their White counterparts. By documenting the lived experiences of diverse populations through interviews, my research seeks to generate actionable, person-informed recommendations for healthcare professionals to mitigate stigma, improve patient-provider relationships, and enhance access to supportive care for all postpartum individuals in Canada.

 

How do you conduct these qualitative measures in your work? 

I have partnered with a local hospital with a group of urogynecologists there to gain feedback throughout the studies process, and through recruitment, I’ve been working with them to target marginalized populations. I also work with a local Edmonton group called the Multicultural Health Brokers which caters their services to immigrant populations and marginalized voices in the community. I’ve been doing a lot of my recruitment through those avenues to try and increase the population to not just be the typical White middle-class-educated groups we see in most research. I have finished recruitment for this study and was able to have my sample come from six different racial backgrounds and a majority identifying as non-White which was a big win for me in terms of the objectives of this study.

 

How did you get interested in your research? 

My interest in women’s health began when I was a child and watched the TV show A Baby Story on TLC which followed mothers throughout their pregnancies and then documented the labour and deliveries of their babies. This show sparked my interest in pregnancy and childbirth. This early interest evolved into a passion as I pursued academic opportunities in pregnancy research during my undergraduate studies, and it has grown from there. As a Black woman, I’ve also witnessed the privilege I hold in accessing certain spaces, and I feel a responsibility to amplify the voices of marginalized individuals who face additional barriers. Women’s health conditions often carry significant stigma, and I feel driven to address these inequities, particularly by examining the experiences of those who are underrepresented in research. Through my work, I hope to shed light on these issues and contribute to creating more equitable healthcare practices.

 

What is the impact you hope to see with your work? 

I hope I can contribute to breaking the stigma surrounding PUI specifically, and making sure it becomes a normalized topic of discussion in healthcare and society. I want to address the stigma-related barriers that prevent people from accessing care, also by highlighting the unique experiences of racially diverse individuals. I wish to inform inclusive healthcare practices across different populations. Ultimately, my goal is to empower women with the knowledge and resources they need, ensuring no one feels shame due to conditions like PUI. In the future, I plan to collaborate with hospitals in my community to build connections between clinical work and research.

I’m starting my PhD soon, where I plan to shift my focus to weight stigma during pregnancy. Specifically, I aim to explore how weight stigma and its internalization affect stress and behavioral outcomes like physical activity during pregnancy. This work will also investigate how these experiences change throughout pregnancy and how factors such as migration status, socioeconomic background, and minority gender identities intersect with weight stigma. Given the significant role of maternal stress and behavior in pregnancy outcomes, this research is a natural extension of my commitment to addressing stigma in women’s health.

 

Where can people learn more about your work?

Learning From Experiences, Adherence, (preconception) Pregnancy (postpartum), Stigma Lab Website (Jordyn’s lab) 

Lab Instagram: @leappps

X account: @jordynncox

Linkedin

Sex-specific risk factors for cardiovascular disease in women

Author: Natalie Szakun, UBC Island Medical program, MD candidate, Integrative Cardiovascular Physiology Laboratory, Trinity Western University | Editors: Emily Anne Opala (Program Officer), Romina Garcia de leon, and Janielle Richards  (Blog Coordinators) | Expert Reviewer: Jennifer Williams 

Published: January 10th, 2025

The viral Instagram song “We’ve Never Really Studied the Female Body” by Farideh (@ilovefarideh) has struck a chord by humorously highlighting serious conditions like endometriosis and polycystic ovarian syndrome, shedding light on how women’s health concerns are often dismissed or trivialized. This song resonated with women who are frequently told their symptoms are exaggerated or imagined (as Ferideh ironically emphasizes). The song’s impact is evidenced by its 1,275 video responses and over 2.5 million views at the time of writing this blog, reflecting a collective frustration and desire for change. This surge in public engagement underscores a broader movement towards acknowledging and addressing the longstanding neglect of women’s health in medical research. 

Leading Cause of Death

Cardiovascular disease (CVD) has been the leading cause of death worldwide for over 20 years, with one in three women affected by heart disease. However, our understanding of the impact of CVD in women remains inadequate. Many still hold the misconception that CVD primarily affects men. Although more women die of CVD, a  2017 study surveying Canadian physicians found that 38% of primary care physicians and 32% of cardiologists believed more men die from CVD. 

Women continue to receive insufficient, suboptimal care, as evidenced by lower rates of diagnosis, preventative care, attention, and treatment.  For instance, women are less likely to be treated with guideline-recommended drugs (such as aspirin or blood pressure medication) after a cardiac event compared to men. Additionally, over 50% of women’s heart attack symptoms go unrecognized. Perhaps most starkly, women have a 40% higher population-adjusted risk of mortality from CVD compared to men.

Examining Sex-Specific Risk Factors 

It is incredibly frustrating that we know so little about the leading cause of death for a demographic that represents over half of the population. This is one of the driving forces behind the work of Dr. Anita Coté and her team at the Integrative Cardiovascular Physiology Laboratory at Trinity Western University.

Historically, the medical system has attributed the increased CVD death rate in women to a delayed onset of symptoms, as women typically present CVD symptoms about 10 years later than men. This often results in a delayed diagnosis for women whereby the disease is more advanced, resulting in a poorer prognosis. Recently, however, work in the Coté lab has made it clear that this logic is flawed. While delayed symptom presentation contributes to the problem, there are also the unrecognized sex-specific risk factors (SS-RF) that many women silently carry. 

Sex-specific CVD risk factors are specific conditions, attributes or exposures that increase one’s risk of developing CVD in the future. Some examples of SS-RF include, adverse pregnancy outcomes, polycystic ovarian syndrome, endometriosis, breast cancer treatments, and early age of first menstruation (before age 12) are linked to increased CVD rates and associated deaths. Many women are unaware of the relationship between these risk factors and CVD, yet a significant proportion of women are affected. For example, in a study by Dr. Coté, of pre-menopausal Canadian women, 41% had one or more SS-RF. 

Current CVD risk screening tools – when will we think of women?

Current screening tools often overlook significant SS-RFs, which reduces their sensitivity in predicting risk. In Dr. Coté’s research, 82% of premenopausal women were classified as low risk when considering traditional CVD risk factors (e.g. smoking, high blood pressure, diabetes); However, over a third of these women had one or more SS-RF. Given their young age and pre-menopausal status, their risk was expected to be low but when SS-RFs were included, Dr. Coté’s lab discovered that 47% of the women in their study may be at risk for developing CVD.

Incorporating SS-RFs into current risk prediction tools is more complex than simply adding a few checkboxes. Although this is a good place to start, more research in this area is urgently needed to develop effective strategies for reducing this future risk. 

Future Directions

The lack of comprehensive research on women’s health, particularly regarding CVD, is a significant issue that demands immediate attention. Farideh’s song, “We’ve Never Really Studied the Female Body,” poignantly highlights the common experience of countless women who have been misdiagnosed or dismissed.

As awareness grows and more voices join the conversation, hope for change exists. For example, the organisation Wear Red Canada raises awareness about women’s heart health by hosting yearly events on February 13th to increase women’s knowledge, curiosity and action to prevent CVD and improve heart health. The work being done by researchers like Dr. Coté, and organisations such as Wear Red Canada, is paving the way for a future where women’s health is no longer a secondary consideration but a priority.

Demystifying Triple Negative Breast Cancer: Understanding the Basics

Author: Rebecca Armstrong, Manager of Patient Education Programs for the Canadian Breast Cancer Network | Editors: Romina Garcia de leon, Janielle Richards (Blog coordinators) | Expert reviewer: Chloe White

Published: November 29, 2024 

Triple negative breast cancer (TNBC) is a term that might be unfamiliar to many, yet it represents 10-15% of breast cancer cases. Let’s break down what TNBC is, why it’s important to understand it, and what actions you can take to understand your risk and spread awareness.

What is TNBC?

Triple negative breast cancer is a subtype of breast cancer that does not have three common receptors known to drive the growth of breast cancer tumours– estrogen (ER), progesterone (PR), and HER2. Because TNBC lacks these receptors, it does not respond to targeted treatments (medicine given by pill or through IV to the entire body) that are common in treating hormone-positive (ER or PR) or HER2-positive breast cancers. This characteristic makes TNBC more challenging to treat and requires different therapeutic strategies. TNBC is also generally considered to be a more aggressive type of breast cancer with a higher risk of returning after treatment ends.

TNBC Stats: A Closer Look

As we mentioned above, triple negative breast cancer accounts for 10-15% of breast cancers. While anyone can be diagnosed with triple negative breast cancer, it can be more common in some groups. Breast cancer is more commonly diagnosed in people over 50, but TNBC is known to be more frequently diagnosed in younger women. Furthermore, Black and Hispanic women are more likely to be diagnosed with this subtype although there aren’t enough studies currently to say exactly why this is the case. Genetics is also associated with TNBC; 60-80% of breast cancer patients with a BRCA1 mutation have the triple negative subtype.

Awareness of TNBC is alarmingly low. According to the Canadian Breast Cancer Network’s (CBCN) TNBC Project Report published in 2023, a staggering 70.6% of triple negative patients had not heard of the term at the time of their diagnosis. Most (76.8%) were informed of the aggressive nature of the disease. Given that a breast cancer diagnosis is already a scary thing to face, one can only imagine the additional shock and surprise this news would bring. It paints a concerning and overwhelming picture of what their future will look like, leaving room for anxiety and grief in an already uncertain time. Improving awareness can give voice to those diagnosed with TNBC and hopefully increase research and the development of new, effective treatments.

Treatment and Support

One of the major challenges faced by TNBC patients is the limited range of treatment options. Unlike other breast cancer subtypes that can be treated with hormonal therapy and HER2 targeted therapies, TNBC requires a different approach. Chemotherapy is currently the standard systemic treatment for triple negative breast cancer, while newer treatments like immunotherapy and therapies that targeted BRCA genetic mutations may be additional options for some. These treatments can be effective, but the lack of targeted therapies means that there is a greater need for new research and treatment development.

There is also a lack of information and support dedicated to women with triple negative breast cancer. CBCN’s report found that patients with TNBC preferred to receive information tailored to their triple negative subtype (94.3%) but 74% said that triple negative tailored resources were not easy to find. Nor was support; 66.2% of TNBC patients found it was not easy or only somewhat easy to connect with other patients with triple negative breast cancer.

Taking Action: Knowing About Your Personal Risk for breast cancer and Available TNBC Resources

Now that you know more about TNBC, what can you do to better understand your own personal risk?

  1. Learn about your family history: Knowing your family history of breast cancer can provide important clues about your risk, especially whether there are cases of genetic mutations.
  2. Explore genetic counselling and testing: If you have a strong family history of breast cancer, talk to your doctor about genetic counselling and testing. This can help identify any genetic predispositions you might have. Even if you or your family members have been tested in the past, newly discovered mutations may be identified that weren’t known at the time of previous testing.
  3. Learn about your breast density: Having dense breasts can increase your risk of developing breast cancer and can make detecting breast cancer on a mammogram more difficult.
  4. Identify the breast screening guidelines in your province: Eligibility for mammogram screening varies by province. Discuss with your doctor about when you should begin screening based on your personal risk and the provincial guidelines.

If you or someone you love has been diagnosed with triple negative breast cancer, there are helpful resources available if you know where to look. The Canadian Breast Cancer Network (CBCN) can help you navigate these resources at their website. 

 

17 Years Too Long: Advancing Women’s Health Through Medical School Curricula

Authors: Naomi (Catie) Futhey, MD/PhD Student, University of British Columbia Faculty of Medicine & Graduate Program in Neuroscience | Editors: Romina Garcia de leon, Janielle Richards  (Blog Coordinators)  | Expert Reviewer: Dr. Liisa Galea

Published: September 20, 2024

Women face disproportionate barriers to healthcare, including longer time to diagnosis and differences in disease presentation, severity, and medication response. Such differences are often ill-defined in the clinical literature. This health disparity is multifaceted but can largely be traced back to a well-intentioned movement at protecting women of childbearing potential after the infamous thalidomide tragedy. 

The initial safety concern settled into a blatant exclusion of women from both clinical and preclinical research, under the disillusioned rationale that women’s health can be inferred from studies conducted only in males. Despite this restriction’s reversal in 1993, for NIH-funded clinical trials, the implementation of proper research techniques to analyze sex and gender differences has only begun recently.

It is often said that it takes 17 years for discoveries in research to make their way into clinical practice, a disconnect thought to be related to systemic barriers between research and medicine. Given this timeline, it will be at least a decade before we can expect to see changes to women’s health. Bridging this gaping research-medicine divide is critical, and targeting medical schools is a viable starting point. 

We know now that what happens in the male context cannot be blindly generalized. Unique anatomical and physiological contexts yield distinct responses to the same diseases, as well as different diseases entirely. There are many conditions which affect far more women than men, and vice versa. There are also disorders which are gender-specific, such as menopause-related conditions and prostate cancer.

Women have lower body weight, smaller organs, and higher fat content than men, factors which all modify performance of medications. Sex differences have in fact been documented at every stage of pharmacokinetics, the branch of pharmacology focused on how drugs move through the body. Despite this, medications are generally prescribed at the same dosage regardless of sex or gender. It is unsurprising then that women are twice as likely to experience adverse drug reactions. Specifically, studies have shown that antipsychotics—drugs commonly used to treat psychotic disorders, depression, and anxiety—are metabolized differently in men and women. One study found that olanzapine, one such medication, had 59% higher bioavailability in women. To some extent, this is a generalizable phenomenon, suggesting that women are largely being overmedicated. 

Despite so many topics demanding dedicated study, research related to women’s health receives disproportionately low funding. This is depicted visually and intuitively in a recent Nature feature. Various initiatives have been enacted in response, including the mandate of sex and gender based analysis as part of the evaluation criteria for each CIHR grant in 2019, and the Canadian Government’s announcement of a $20 million National Women’s Health Research Initiative in 2022.

Despite such enticing proposals, we have yet to see actionable change manifest downstream in the care women receive at the doctor. A British Columbia Women’s Health Foundation 2019 report stated that over half of women in the province felt that a physician had diminished or overlooked their symptoms. Similar qualitative reports broadly echo these patient perspectives.

Patient care isn’t the only thing that suffers from this disparity: poor health translates to lost productivity and missed work. Importantly, a recent report by the World Economic Forum estimates that not only do women spend 25% more time in “poor health” than men, but that prioritizing women’s health research could boost the economy by $1 trillion by 2040. 

17 years is too long to wait for clinical change. Augmenting the medical education system is one way to bridge this gap and ensure new and accurate research makes its way into the doctor’s office in a timely manner. Established physicians are often set in their practices and changes can be challenging to integrate. Targeting students early on in their training before these routines set in, however, is a logical solution. 

Medical school curricula have changed substantially over the years, but better education in women’s health is still an area of need. In particular, a 2021 Toronto survey of 16 Canadian medical school program and course descriptions found that women’s health may not be adequately incorporated into clinical training programs. Only approximately 15% of curricular documents examined specifically mentioned “sex/gender” or “women’s health”. Additional surveys of clinical trainees in the United States have found that the majority feel ill-equipped to deal with sex and gender differences in healthcare.

Bolstering the clinical education of future physicians has the capacity for exponential change in the betterment of women’s healthcare delivery. Doctors of all specialties have direct communication channels to the general public through their patients. This is important not only for individual care, but for the communication of valuable medical knowledge to the population at large. Informed patients are better equipped to understand their own health and when to seek care. Prioritizing medical school curricula has the potential to deliver equitable, quality healthcare to a population which cannot afford any further time delays. 

Keep up with Catie Futhey’s work on Twitter/X: @CatieFuthey

Empowering Change: Celebrating the International Day of Action for Women’s Health

Authors: Tanvi Puri, PhD Candidate, University of British Columbia & Bonnie Lee, PhD Candidate, University of British Columbia/CAMH | Editor: Romina Garcia de leon (blog coordinator)

Published: May 28th, 2024

The International Day of Action for Women is celebrated annually on May 28, and is dedicated to raising awareness of and advocating for women’s health and rights. This day was first observed in 1987, and aims to advocate for women’s reproductive rights, highlight healthcare disparities faced by women, raise awareness about gender-based violence, and promote sexual health and rights. 

One of our key missions at the WHRC is to advocate for the improvement of women+’s health research and policy. Members of the WHRC have dedicated their time and expertise to advocating for women’s health by testifying before the Canadian Parliament (more details linked below). Several Cluster members were invited by the House of Commons’ Standing Committee on Health to appear as part of a panel of witnesses in view of its study of women’s health, with a focus on mental health. Dr. Liisa Galea highlighted the importance of recognizing the importance of studying female-specific factors affecting health, and recognizing sex differences in medical research to ensure tailored and effective healthcare treatments. Dr. Catriona Hippman called for increased awareness and access to genetic screening and counseling services, particularly for individuals with a family history or disease risk. Dr. Tina Montreuil spoke about the urgent need to increase support and resources for perinatal mental health services, and the significant impact of mood disorders and anxiety during pregnancy and the postpartum period. Their testimonies emphasize the breadth and urgency of critical issues facing women’s health. You can view the meeting details and video recordings here for April 11 (Dr. Liisa Galea) and here April 8 (Drs. Catriona Hippman and Tina Montreuil).

One of our Senior Cluster Leads, Dr. Liisa Galea, and Cluster members Dr. Laura Gravelsins and Tallinn Splinter, also submitted a policy brief to the House of Commons highlighting the chronic underfunding and undervaluation of women’s health research on behalf of the WHRC and Centre for Addiction and Mental Health. They note that although women live longer than men, they do so with more chronic diseases and mental health conditions, and points out that the lack of effective research on women’s health variables leads to delayed diagnoses and suboptimal treatments for women. They call for dedicated funding, specialized peer review committee, and mandatory training in sex and gender-based analysis to bridge the knowledge gap and improve health outcomes for everyone. In addition to advocating for women’s health research to parliament, the WHRC supports and showcases the publication of scientific peer reviewed articles as well as other knowledge mobilization initiatives. A recently published article about the disparity in women’s health research funding can be found here and Dr. Liisa Galea’s op-ed in the Toronto Star can be found here. 

Dr. Wendy Norman, another member of the WHRC, has contributed extensively to sexual and reproductive health research and policy. She plays an important role in leading public health initiatives and using evidence-based practices that work to enhance access to contraceptives and abortion, and development of reproductive rights, particularly in underserved and rural communities. Dr. Norman is also involved with the education and training of healthcare providers, and her research findings have informed healthcare practices worldwide. Initiatives like those led by Dr. Norman have informed policy decisions and paved the way for the recent momentous decision for the federal  government to make contraceptives free across Canada in 2024.

Small individual actions by community members can snowball and make a significant impact! Here are a few things you could do to make a meaningful contribution to advancing women’s health: 

  • Advocate for policy change by signing local petitions, writing to your MLA, or vote in support of research funding, improved maternal and fetal healthcare, and increased access to reproductive health services. 
  • Volunteer to participate in research studies, or share calls that others might be able to participate in that you don’t qualify for. 
  • Share information about women’s health issues on social media, or participate in community events and awareness campaigns.
  • Support and donate to women’s health organizations such as the Women’s Health Research Institute, Planned Parenthood, or local women’s clinics.

There is a desperate need to grow the discipline of women’s health research to overcome the concerning gaps in knowledge that jeopardize women’s health. Please donate today to catalyze women’s health research worldwide. Your gift will support:  

  • Publications, education and academic opportunities that will enable groundbreaking knowledge translation to help transform women’s health on a global scale
  • Vital advocacy efforts to change the policies and practices that are impeding women’s health research

Happy International Day of Action for Women’s Health 2024

May 28 is International Day of Action for Womens’ Health. This day was first observed in 1987, and aims to advocate for women’s reproductive rights, highlight healthcare disparities faced by women, raise awareness about gender-based violence, and promote sexual health and rights. 

The Women’s Health Research Cluster is committed to empowering and advancing women’s health research. To honor the International Day of Action for Women’s Health, we are celebrating the strides the Cluster and its members have taken to advocate for the funding, prioritization, and advancement of women’s health research. Small actions together can make a significant difference by raising awareness and driving policy changes, and we encourage individuals from all walks of life to make their own meaningful contributions to this movement! 

Learn more about our advocacy work and find ideas on how you can get involved in our blog post.

2024 Inaugural CAMH womenmind™Conference: Advancing Research on Women’s Mental Health

Author: Romina Garcia de leon, PhD Student, University of Toronto/CAMH & Laura Gravelsins, PhD, Postdoctoral Fellow, CAMH | Editors: Jena Roy, Manager, Philanthropic Gifts, Research (womenmind) CAMH; Bonnie Lee, PhD Candidate, University of British Columbia, CAMH 

Published: May 10th, 2024

On April 17th and 18th 2024, CAMH womenmind™ hosted the inaugural conference on Advancing Research on Women’s Mental Health in Toronto. Across 9 symposia, this conference delved into diverse areas of women’s health research. Women’s mental health research has been chronically underfunded and understudied,  which has resulted in worse health outcomes for women, girls, and gender-diverse people. Over 450 people gathered from around the world with a shared purpose: to learn from leading experts and catalyze meaningful change in the field of women’s mental health research. 

The diversity of speakers made the event dynamic, with research scientists, clinicians, people with lived and living experience experiences, and healthcare advocates sharing the stage. As Dr. Liisa Galea, the inaugural womenmind Trevling Family Chair in Women’s Mental Health and Senior Scientist at CAMH, emphasized during the closing speech: “If healthcare is our boat and our healthcare practitioners are the crew, research is the compass that shows them where to go.” It is the synergy of these forces that will reshape the landscape of healthcare for women, and ultimately lead to better health for all. This blog will highlight a couple of lessons learnt from some of the brilliant speakers at this conference. 

What do we know about how hormonal cycles impact mental health? 

For some time now, we have understood that hormones impact mood. As Dr. Benicio De Frey and Dr. Marija Kundakovic both stated in their talks, it is times of hormonal fluctuations that increase the risk for mood disorders (like depression, and anxiety). Premenstrual dysphoric disorder (PMDD), the severe form of premenstrual syndrome (PMS), appears to affect 5-8% of individuals who menstruate. PMDD is often difficult to diagnose as it shares similar symptoms to depression, PMS, and bipolar disorder, and this leads to incorrect or delayed treatments. Additionally, an accurate diagnosis requires consistent data for 2 months, showing that symptoms coincide in the period preceding menstruation (luteal phase). Dr. Frey’s team created the ‘McMaster Premenstrual and Mood Symptom Scale (MAC-PMSS)’ to track symptoms across the menstrual cycle, allowing individuals suffering from symptoms of PMS or PMDD to take control of their health and bring this data directly to their healthcare providers. 

Do we know how sexual orientation plays into mental health? 

Structural stigma and discrimination are associated with adverse mental health outcomes. Dr. Robert Paul Juster‘s talk revealed that structural stigma can directly impact an individual’s physiology. Dr. Juster’s research considered whether stress and sex hormones varied depending on sexual orientation. Following a mild stressor, lesbian, gay and bisexual (LGB) women had higher levels of testosterone, progesterone, and cortisol reactivity compared to heterosexual women – the same wasn’t seen in gay and bisexual men. Another study investigated daily morning cortisol levels of LGB versus heterosexual individuals and found that differences in cortisol levels only became apparent when the data was separated by those who had disclosed their sexuality to their friends and family, as those who had not disclosed their sexuality showed higher levels of diurnal cortisol. Understanding how stress and biomarkers of stress differ by sexual orientation and individual experiences brings us closer to achieving precision medicine. 

How does menopause affect the aging brain?

Menopause involves a steep depletion of circulating sex hormones, with implications for profound changes in the brain, as several speakers discussed. For instance, Dr. Natasha Rajah talked about how her team has been contributing to the Brain Health at Midlife and Menopause Study (BHAMM). A central aim of BHAMM is to diversify the cognitive neuroscience of aging research, recognizing that much of our aging research comes from highly educated white individuals. Another is to investigate how menopause status affects memory and memory-related brain activity. Some notable findings are that lower spatial context memory and decreased activity in certain brain regions associated with encoding and retrieval were associated with postmenopausal status and advanced age. Her research suggests that menopause amplifies the effects of chronological aging. Studying female-specific experiences such as menopause can reveal differences in the aging trajectory and implications for disease risk.  Moreover, research must examine specific hormonal experiences across different sexes and genders, as they can have unique contributions to health and disease outcomes

The impact on people with lived experiences and advocates driving change:

The symposium titled “Elevating Voices: Integrating Expertise and Advocacy in Collaborative Research for Greater Impact” was the heart of the conference. Megan Pilatzke shared the story of her late autism diagnosis and the difficulties she faced navigating the healthcare system that didn’t understand her. Megan had sought help for her mental health on several occasions and was diagnosed and medicated but her symptoms prevailed. It was only after reading a book titled “Women and Girls With Autism Spectrum Disorder” by Sarah Hendrickx that Megan realized she had been misdiagnosed her whole life. After seeking an (expensive) Autism assessment, she received her diagnosis at the age of 31. Megan highlighted that males are predominantly diagnosed with autism (3:1 male-to-female), but most research insufficiently focuses solely on caucasian males. There is also a diagnostic sex bias where females are less likely to be diagnosed because the screening criteria cater to characteristics that do not reflect the presentation of autistic females. Furthermore, Dr. Meng-Chuan Lai presented his research that demonstrates that females display more masking behaviours than males. Together, it is apparent that more research is needed on how symptoms and manifestations of autism differ in females versus males, and excluding these differences in research can be extremely harmful. 

Patricia Tomasi, co-founder and Executive Director of the Canadian Perinatal Mental Health Collaborative(CPMHC), shared that 1 in 5 individuals in the postpartum stage develop postpartum depression – affecting 80,000 families in Canada per year. Patricia suffered from an extreme form of postpartum depression and psychosis throughout both of her pregnancies (read her story here). While seeking medical help, Patricia was sent home without any support on multiple occasions and had to continuously advocate for herself to her doctor to receive a diagnosis. As a result of her lived experiences, Patricia works tirelessly to amplify the stories of women who have suffered through postpartum depression, as not all people suffering end up receiving appropriate care and support before catastrophic consequences, such as suicide. The CPMHC does an annual walk for perinatal mental health named “Flora’s Walk for Perinatal Mental Health.” The stories that Patricia and those at the CPMHC have brought to life fuel the research and help bring perinatal mental health to the forefront of healthcare concerns. Patricia proposes that Canada implement a Perinatal Mental Health Strategy that would create lasting and systemic change for birthing parents, and families. 

All the speakers and inspiring conversations during the womenmind conference provided invaluable insights and underscored the stark reality that achieving health equity across sex and gender remains a long journey ahead. Advancing women’s mental health research will improve care for 51% of the world’s population, through early intervention to prevent mental illnesses and personalized treatments to ensure better outcomes. Research is vital to our success and we look forward to driving change and gathering again for the next CAMH womenmind Conference. 

Behind the Science: Women’s Health and Forced Migration

Interviewee: Dr. Shahin Kassam, RN, PhD, Postdoctoral Research Fellow, University of British Columbia School of Nursing, Capacity Research Unit

Authors/Editors: Romina Garcia de leon, Shayda Swann (Blog Co-coordinators)

Published: February 9th, 2024

This week we talk to Shahin Kassam who tells us about her work on forced migration, specifically how displacement (for reasons such as climate instability, political conflict, coercion and human trafficking) impacts local and international intersections where gender, race, class and migrant status converge to shape women’s health and access to health and social services.

Can you tell us a bit more about your research?

My doctoral research looked at how public health nurses located here in British Columbia support women living with refugee status while also transitioning into parenthood. This intersectionality-framed research identified fragmented pathways women have to self-navigate to access health and social systems while also living with the impacts of gender-based violence, discrimination, and fear stemming from migration policies.

This doctoral work opened up more questions for me to further understand women’s experiences of accessing systems of health and social well-being and how they are shaped by these conjoint experiences of racial discrimination, gender-based violence, and their migrant status. To specify “forced migration” in this work is important because when we talk about migration it is often in binaries, either voluntary or involuntary. Experiences of being forced can be about being categorized by policy as a refugee, or as seeking asylum. But it can also be categorizations where women are rendered dependent and socially disconnected thereby increasing their risk for gender-based violence exposure and consequential chronic and acute health problems such as post-traumatic stress disorder, depression, hypertension, diabetes, and asthma. Rather than systems deciding whether a woman migrates forcibly or not, why are we not letting women’s experiences shape the narrative?

Essentially the research I’m doing just really intentionally ensures that we place women and their experiences at the forefront of understanding forced migration.

 

What drew you to this work? 

I come from a clinical public health nursing background. My research took off from the stories and experiences that I had with varying women with different backgrounds who experienced marginalization or disadvantages such as poverty or lack of support, literacy skills, and limited education. I constantly saw the inequities that these women faced and couldn’t let go of how that deserved more attention. So I think that just really propelled me into doing more.

Can you share any findings from this work?

As a Postdoctoral Research Fellow, I’m working with my supervisor Dr. Vicky Bungay who is the Scientific Director of the Capacity Research Unit and professor at the UBC School of Nursing, to build my program of research involving the development of non-profit community partnerships with sectors that are really integral to the safe settlement of women. So the research being done is informed by community-based participatory research principles where the community drives the research process. The overarching goal is to inform the enhancement of access to health and social services with the experiences of women impacted by gender-based violence, racism, and forced migration.

Through a SSHRC Partnership Engagement Grant, our community co-lead, Diana Ospina from DIVERSEcity Community Resources Society (DCRS) and I convened a group of leaders from three additional non-profit organizations focused on settlement service delivery. Together we met often and shaped the research process. We recruited nine women who had been in Canada from 0-5 years across varying races, migrant statuses, and languages such as Spanish, Ukrainian, Dhari, and Tigrinya.

Some of the key findings that we found through these women’s stories were that women need support in their pursuit of meaningful employment and integration into the labor market sector. Loss of financial independence and dealing with poverty is very challenging. Language barriers continue and language classes are often inaccessible because of the lack of affordable childcare. Another finding is housing that is safe from forms of violence or exploitation. The need for social growth and connections is another finding. When women arrive in Canada, often their only connection is their partner or their partner’s family/friends, creating dependency.

To further understand the experiences of women impacted by forced migration, we are hoping to grow through further funding opportunities to delve deeper into this work.

 

Given the lack of attention to forced migration, and women’s health, what keeps you moving forward? 

A big part of doing this work is grit and tenacity and simply not giving up. I think that if you are passionate about something, and you’re surrounded by support, that I think those are two big key ingredients to doing the work. For me, it’s the applied experiences as a nurse that continue to just really propel me in this direction. And then I think it’s the pragmatic and inclusive pillars and the values that align my work with the Capacity Research Unit and the School of Nursing that have promoted building and weaving together this program of research.

How can people learn more about your work?

Website: Shahin Kassam’s website

Research Unit: Capacity Research Unit, Women’s Stories of Forced Migration

More information:

Funder: SSHRC Partnership Engagement Grant

Principle Investigator: Dr. Vicky Bungay, UBC School of Nursing, Capacity Research Unit

Community Co-Applicant: Ms. Diana Ospina, DIVERSEcity Community Resources Society

Academic Co-Applicant: Dr. Shahin Kassam, Postdoctoral Research Fellow

Community Collaborators:

 

 

 

 

Beyond Boundaries: Patient and Community Engagement Reshaping Research Training

Authors: Juliette Wilson-Sanchez, MSc Student, Queen’s Cancer Research Institute, Department of Biomedical and Molecular Sciences, Queen’s University and Farzaneh Afzali, PhD Candidate, Department of Biomedical and Molecular Sciences, Queen’s University | Editors: Romina Garcia de leon, Shayda Swann (Blog Coordinators) 

As graduate students, we’re often asked how we stay motivated to continue our work after all the long nights and endless failed experiments. For us, the answer was simple – the community of patients we have met throughout our training continuously pushes us to work harder. The opportunity to see beyond the bench and hear the stories of patients affected by what we are studying provides a more in-depth perspective of our research and its impact. Over the past few years, our involvement in the local patient community, organizing events such as the Walk of Hope, has informed us of the ways in which we can support our patient community, improve the communication of our work, and tailor aspects of our research questions. These conclusions are the result of close interactions with patients within our local community. These interactions have completely shifted the way we reflect on our work – but are these interactions beneficial to the patients?

A sense of community is beneficial for cancer patients in many ways. Patients who participate in support groups have been shown to have better quality of life and improved mental health. While these support groups remain an important source of community for patients, it is important that researchers work to provide a similar sense of support to patients. Initiatives such as the Queen’s Cancer Research Institute’s Patient Engagement Network (QCRI-PEN), work towards establishing meaningful connections and bidirectional exchange of ideas between researchers and patients in the local community. 

Patient engagement in initiatives such as the QCRI-PEN aims to follow Health Quality Ontario’s guiding principles of patient engagement. Patients are invited to share their ideas, concerns, and desires in a trusted circle. This patient-centric approach cultivates a sense of ownership and empowerment in the patient community, making them active players in their healing journey. Participating in patient partnerships in research can highlight pressing needs in the patient community that supporters may not be aware of. For example, patient partners associated with Ovarian Cancer Canada participate and provide guidance on clinical and basic research funded by Ovarian Cancer Canada. Over the years, this has ensured that patients from across the country have felt included and heard by the research community. Studies, such as the Every Woman Study, are examples of the outcome of mutually beneficial partnerships between researchers and patients as their successful recruitment was mainly conducted using their own collaborative networks and social media. Through the relationships fostered by patient engagement, studies are able to reach a diverse group of patients and reach an understanding of what issues are more pertinent to that specific community. This information is essential for the improving quality of life for cancer patients; however, many cancer patients do not participate in patient-oriented research. One study demonstrated only 5% of cancer patients were actively engaged in research and only 26% expressed interest in doing so. Low participation may be a result of a lack of trust or a sense of partnership between researchers and patients, further emphasizing the importance of reinforcing community engagement in research.

Bridging the trust gap between patients and researchers requires mutual endeavor that benefits both parties. Trust in science and the researchers conducting the studies remains one of the barriers to patient participation in research. Reinforcing a trusting relationship through the creation of a supportive community is key to improving research and subsequently patient experience. One of the main elements we have observed as a key component of a supportive community is effective and reciprocal communication. Unfortunately, one of the fundamental reasons we have observed that keeps patients away from the scientific community is complicated science terminology. This barrier not only keeps patients and caretakers away from participating in research but also hinders the process of making informed decisions and unleashes more opportunities for misinformation to spread. Trainees have been shown to benefit from science communication courses that prepare them for this important aim alongside support from health advocates and communicators who can translate complicated scientific terminology to lay terms and also help bridge this gap. As ovarian cancer research trainees, we have learned how to communicate our research using accessible language to our community through the Walk of Hope and QCRI-PEN events that established connections with patients and provided us with feedback from our community. 

As research trainees, we are committed to nurturing these bonds with our patient partners. The ongoing mutual support and shared insights from a more informed and involved community empower us to serve patients more effectively. We would love to be an inspiration for fellow trainees and researchers, encouraging them to foster these meaningful connections with their communities. These moments of connection are something we hold dear, forever grateful for the enrichment they bring to our scientific journey.  

 

Beyond the Focal Points of Endometriosis and Chronic Pelvic Pain

Author: Danielle Perro, BMSc, PhD | Editors: Romina Garcia de leon, Shayda Swann (Blog Coordinators) 

Published: September 15th, 2023

*This article represents Danielle Perro’s views and not necessarily those of her employer.

Endometriosis is a chronic inflammatory condition characterized by the growth of tissue similar to the lining of the uterus found elsewhere within the body. Though typically such tissue is found within the pelvis, it has been found in many extra-pelvic sites. It is known to impact as many as one in ten women worldwide, and though data on the experience of endometriosis in transgender men, gender diverse and non-binary folks are more limited, they too experience the condition—this represents a hugely important area of ongoing/future research. 

Similar to endometriosis, chronic pelvic pain (CPP) is highly prevalent in women, affecting as many as one in four women of reproductive age. Furthermore, females living with either endometriosis or CPP experience similarly significant physical and mental health symptoms which impact their ability to go about their day-day life. According to the Royal College of Obstetricians and Gynaecologists, CPP is defined as ‘intermittent or constant pain in the lower abdomen or pelvis of a woman of at least 6 months in duration, not occurring exclusively with menstruation or intercourse, and not associated with pregnancy’. Endometriosis and CPP share many similarities, not only in their burden and commonality, but also in how they are managed. Unfortunately, in both cases, the treatments which are targeted at the pelvis or primary disease site are often ineffective or require a lot of trial and error to arrive at a suitable option. Examining years of work into endometriosis, CPP and other localised pain conditions (like migraine and low back pain), it’s important to shift the way we think about endometriosis and CPP by looking a step beyond the pelvis at whole body pain symptoms and their implications. Similar to the MaPP research group’s work on CPP, women with CPP and endometriosis have been shown to commonly experience pain outside of the pelvis, and with an increased number of regions affected by pain, there is a strong association with worse mental health and quality of life.  

Shifting the dial away from the pelvis

Endometriosis has long been described as a gynaecological condition, given that many do experience symptoms related to the pelvis and reproduction. In addition to CPP, people with endometriosis experience pain associated with their periods and/or pain during or after sex, as well as infertility. However, a recent genetic study has demonstrated that endometriosis-related symptoms are far more complex than being just a pelvic-condition. This study showed that endometriosis is genetically linked to inflammatory conditions like asthma, as well as body-wide pain symptoms, like migraine, back pain, and multi-site chronic pain (pain all over the body). Endometriosis is associated with systemic symptoms, so why do we still ascribe a gynaecological label, rather than calling it a systemic condition? Leaders in the field have put forward a strong case for considering endometriosis as a systemic disease. More work remains to be done to understand what the public health implications, and impact on individual care, of doing so would be. 

Reconsidering our current understanding of endometriosis

Earlier this year, I attended and contributed to the Reframing Endometriosis: Power, Politics and Potential Futures conference in Birmingham, UK. This conference was the first to truly bridge the biomedical and social science research divides, whilst creating a platform for people with lived experience of endometriosis and pain to equally contribute to the panels their own experiences with the condition. Similar questions to the ones above were raised, about why we still consider endometriosis to be a ‘gynaecological condition’, when so many experience system-wide symptoms. Everyone in attendance, myself included, was confronted with moments of discomfort, as our current understandings of endometriosis were challenged. It’s become clear that in order to move the endometriosis field forward and evolve both our definition of the condition and effective treatments, we need to continue breaking down barriers between stakeholder siloes. When I envision the future of endometriosis research, I envision one which strives for personalised medicine. To achieve this, we need to consider the entire person with endometriosis and CPP, as with these conditions there is often more than meets the eye.

To learn more about this work, follow Danielle Perro on Twitter.