Black Health: Removing Barriers to Care

The inequities experienced by racialized communities often spill into the doctor’s office or hospitals, impacting how – and whether – they receive care. In fact, despite being disproportionately affected by breast cancer, Black women have lower cancer screening rates due to systemic barriers, such as stigma, discomfort, fear and mistrust.

The Peter Gilgan Centre for Women’s Cancers at WCH, in partnership with TAIBU Community Health Centre, Women’s Health in Women’s Hands Community Health Centre and The Olive Branch of Hope (TOBOH) want to change that. In October, they hosted their first Breast and Cervical Cancer Screening for Black Women event, which provided accessible, community-based mammograms and Pap tests to 46 Black women.

In addition to screening appointments and follow-up care, the event also provided mindfulness sessions, onsite social work support and the opportunity for women to speak directly with clinicians. Care providers and navigators were onsite as well to stay with patients throughout the experience.

“The women who participated provided heartwarming feedback about how much the event meant to them and how it created a safe and positive environment to get their screening tests done,” says Dr. Aisha Lofters, medical director at the Centre, and family physician, WCH. “They appreciated the non-clinical approach, and one woman told me, ‘This is how Black women should be treated.’”

In a post-event evaluation, the participants found the experience to be resoundingly positive: 97.6 per cent felt the event created a safe environment to undergo screening; 87.5 per cent felt empowered by the experience; 92.7 per cent felt an event specifically for Black women made them feel supported and heard regarding their health; and 100 per cent of respondents felt there should be more events tailored to supporting Black women in the healthcare system.

“If we can continue on this path to developing partnerships with other organizations, we can work closely together to ensure these communities feel seen and heard and know that the healthcare system is inclusive and desires to meet the needs of all people regardless of race, colour or creed,” says Leila Springer, CEO of TOBOH.

The Centre continued its partnership with TOBOH, as well as the Canadian Cancer Society and ReThink Breast Cancer, with the Best Health for Black Women: A Conversation About Breast Cancer and Gynecological Health event in March of this year. The event followed the tremendous success of Breast Health for Black Women in February 2022, this time expanded to include awareness and information on gynecological health in direct response to feedback from attendees, as gynecological conditions, such as uterine cancer, fibroids and endometriosis, have a disproportionate impact on Black women.

Empowering Black women with health and wellness information tailored specifically to them, the event brought together experts, organizations and community members for a conversation about breast cancer and gynecological health. Best Health for Black Women provided a safe, inclusive space for women to have their questions answered and access educational and community resources created by and for Black women. Attendees heard from medical experts and community members with lived experience through a keynote presentation, panels and digital stories. The patient voice and a strong theme of being your own advocate was woven throughout the evening.

“This is not about me,” says Dawn Barker-Pierre, TOBOH ambassador, breast cancer survivor and Best Health for Black Women panelist. “It’s about those coming after me. Those who feel silenced and feel they don’t have a voice. I’ll be that voice.”

Too often, resources and programs centre on whiteness, which leads to unwelcoming spaces that overlook Black women's unique experiences. The team at The Centre is actively working to change this by making Black women feel seen, heard and represented. These events have and will continue to make strides forward in reaching this goal by removing some of the barriers and enabling Black women to be the focus of their own healthcare in safe and supportive environments.

The Black Headache Study: It’s Not Just a Migraine!

Headaches are one of the leading causes of disabilities in adults worldwide, and systemic discrimination impacts the ability of Black patients to receive diagnosis and follow-ups, resulting in limited differential diagnosis, underestimated prevalence rates, barriers to treatment and poorer health outcomes.

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Women’s College Hospital (WCH) has made institutional commitments to understanding and removing barriers to care for Black patients. Along with a team of experts, Dr. Suvendrini Lena, a neurologist at WCH, and Janelle Noel, a member of the study’s advisory committee and service coordinator at WCH’s Sexual Assault/Domestic Violence Care Centre, invited Black patients with headaches from WCH and community health centres serving the Black communities to share their experiences with headache care.

Dr. Lena and Janelle spoke about their study, its findings, and why research equity is important in providing the best care to patients.

WCH: Tell me about your research on headache and its disproportionate impact on Black communities. What were the findings?

Dr. Lena: This was a quality improvement study, focusing on two basic questions:

1. What are the barriers to treatment for headache patients from Black communities, both within our Headache program at WCH and in the larger GTA?

2. What interventions will improve access to headache care?

We were asking these questions in order to improve headache clinic access for patients from Black communities which is an important way of addressing WCH equity goals and commitments. Our constructivist qualitative methodology required us to learn from what participants are telling us and adapt our questions and analytic approach as we learn. We were careful to identify and work with community health partners with experience in advocacy within Black communities. Research questions and objectives were explored and developed with this Community Advisory Group consisting of leading community health advocates as well as community activists who also suffer from migraines.

Janelle: Before I was invited into the study by Dr. Lena, I did not have a real understanding about headaches in general. Headaches were solved with Tylenol or Advil; I had no idea about the neurological implications or effects. Since being a part of the study and the recruitment of participants, it is mind-blowing how many Black people suffer with headaches and migraines and how they manage day to day.

Were any of the findings surprising for you or your team?

Dr. Lena: There is a paucity of Canadian research on headache in Black communities. We know from American research that Black male patients receive the least headache care nationwide. Black headache patients report more headache days per month, greater pain intensity and related disability but are less likely to utilize emergency departments (ED), less likely to receive a specific headache diagnosis, less likely to receive headache specific care and less likely to receive imaging to investigate atypical headaches.

Our study was focused on understanding the experiences that underlie these data.

Many themes emerged as we listened to the interviews and analyzed them. For example, Black patients often begin to experience headache symptoms in their childhood or teens but spend decades seeking care without receiving it. Patients shared experiences of years spent suffering in isolation, mistreatment in EDs, turning to friend and family networks for support, coping strategies, and medical advice.

Many patients described experiences of racial stereotyping: When forced to advocate for themselves, they were perceived as "angry black women" or "uncooperative" or drug seeking. A sense of stark power imbalance between doctor and patient was a common theme in many healthcare interactions.

For almost all patients, receiving a correct diagnosis for their headaches and specific treatments was a turning point with profound impacts on quality of life, work and family relationships.

Finally, costs of treatment and time required to travel to appointments created significant barriers for many.

What needs to be done to raise awareness about headache?

Dr. Lena: Raising awareness of migraine and effective treatments is important but we must develop accessible, affordable, and equitable models of care in tandem. Virtual care may be particularly meaningful for Black parents who are juggling work and family responsibilities, many with significant economic constraints. Rapid referral pathways are also essential. These could target young people who are just beginning to experience significant headaches to minimize lifetime headache burden.

Janelle: The education needs to be both sided for referral providers and patients. Practitioners need to understand the signs, symptoms, and treatment options, and patients need to recognize and educate themselves about headaches if they feel they are an ongoing concern.

Why is this research important?

Dr. Lena: Women's College Hospital has made strong institutional commitments to combatting anti-Black racism. One important aspect of this work is hearing what Black patients are saying with respect to barriers to care. In the next phase we will bring our findings back to our advisory committee and to study participants. Our goal is to co-design a clinic model that will meet community needs.

Janelle: This is a real health issue that has debilitating effects. It has an impact on people’s lives in a very negative way, yet it can be addressed and treated. Research is education, and clinicians rely on research to inform their practice. Race-based research is extremely important because it will assist the health systems and direct the appropriate supports when addressing Black health and Black health outcomes.