Inclusivity in headache and migraine care and research

This is a reprint of an article originally published in the INvisible Project’s 5th edition of their Migraine and Headaches magazine, written by Antidote’s Head of Partnerships and Patient Advocacy, Lindsey Wahlstrom-Edwards. 

A recent analysis performed by Owen Garrick, MD, for the Coalition for Headache and Migraine Patients (CHAMP) found that clinical trial participants for seven of the recently approved treatments for migraine disease were, on average, 82% non-Hispanic white individuals. Insufficient representation in clinical trials can have serious implications for the effectiveness of treatments, according to research done at the Medical University of South Carolina, Charleston.

Disparities in health care access and outcomes and their potential solutions have been debated for years. What is newer to these discussions, though, is the concept of designing medical research and providing access to health care in ways that are truly inclusive. For example, inclusive design may include: selecting research sites in underserved communities, ensuring materials are translated into several languages and that translators are available on site, and incorporating new technology to reduce the amount of time individuals have to spend at the clinic or hospital. By focusing on inclusive care and research design versus “diversity in research,” the burden of access shifts from the health care consumer to providers and researchers. It’s a simple reframing with significant implications.

Jaime Sanders, a well-known patient advocate who also goes by “Migraine Diva,” is working to move the needle on access and equity. A member of CHAMP, Sanders was asked to co-lead its Diversity and Headache Advisory Council (DiHAC), which aims to identify and support solutions to racial health disparities in headache medicine. She also founded the Heralding Excellence in Access to Diverse and Affordable Care for Headache Disorders Equity (headACHE) program, which seeks to train providers working with marginalized populations to identify and treat individuals who may have an undiagnosed headache disorder in a culturally competent way.

Both aim to move from raising awareness of the need for universal access to care to taking action to improve access for all marginalized groups. “I want [my legacy] to be the ongoing pursuit of getting access for anybody who is marginalized and underserved,” says Sanders. “Health care is a right, not a luxury.”

A personal cause

As a child, Sanders received care for her migraine disorder through a federally qualified health center, Morris Heights Health Center, in the Bronx, New York, where her father worked. The center was staffed by individuals from diverse backgrounds, which made a huge difference in how Black, Indigenous and People of Color (BIPOC) received care. “It was a different language spoken. It was a different level of compassion and understanding,” she says.

Sanders’ personal experiences are backed by data. Garrick found Black men were more likely to engage in preventive care, especially invasive procedures, when recommended to do so by a Black male doctor. Similarly, data published by the National Bureau of Economic Research drew the same conclusion: Black men were more likely to agree to more invasive, preventive services when doing so was recommended by a Black doctor.

This preference could be driven by physician practices. Garrick’s research found Black doctors were more likely to take more detailed notes and Black patients were more apt to give them more detailed answers. In headache disorder treatment, cultural awareness is particularly critical, as BIPOC are less likely to be diagnosed or seek care for their headache disorders, according to the American Migraine Foundation.

Making an impact

The work Sanders and her DiHAC and headACHE colleagues are undertaking seeks to address the issue of access to care and, critically, lead people to the right diagnosis.

DiHAC was formed by CHAMP in June of 2020 during the national reckoning around racial and social inequity. When it comes to headache and migraine disorders, Sanders aimed to change the dialogue so she was not the only person in the “room” (virtual or otherwise) discussing how underserved and marginalized groups are impacted by these conditions. The group—composed of BIPOC, allies, health care practitioners, and patient advocacy groups—is engaged in actively learning how to better understand issues of diversity and equity in migraine and headache disorders, particularly around issues of access to affordable and equitable care.

The headACHE Program aims to directly train and improve care on the frontlines. Run by Sanders, it will leverage a CME toolbox, developed by the Association of Migraine Disorders, to implement the training in five federally qualified health centers. The training will help providers identify headache disorders that may be “going under the radar” in individuals seeking care for related conditions, like high blood pressure, stroke, anxiety, and depression, according to Sanders. The program will also provide cultural competence training for health care professionals working with BIPOC living with headache disorders. If successful, the pilot will expand regionally in the coming years.

Engaging individuals in clinical trials to help get treatments to the point of approval is another critical aspect of ensuring equity in health care. After all, the first person cured of any ailment will be in a clinical trial. For this work, it is important for researchers to remember equality is not equity. A true commitment to engaging BIPOC in medical research means putting in the work by maintaining a presence in the community, forging relationships with community leaders, and taking the time to truly listen to individuals’ wants and needs.

“[Researchers] have to set the groundwork and become a presence in the communities,” said Sanders. “You need boots on the ground and to get involved in the communities through a trusted partner.” 

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