Ten Eleven things to facilitate participation of underrepresented groups in headache medicine research

Abstract

Headache is a leading reason for medical consultation and yet remains underdiagnosed. 1 Headache diseases are highly prevalent and disabling. Migraine alone affects 1 billion people and is the second leading cause of disability worldwide. 2 There still remains a dearth of information surrounding how the headache diseases affect underserved populations and most importantly how this can be addressed. Migraine prevalence studies based in the United States indicate that the prevalence is highest in Native Americans, followed by White Americans, Black Americans, Hispanics, and Asian-Americans. 3,4 Black Americans are less likely to be diagnosed with migraine, in part because they are less likely to endorse full criteria for migraine, and are also less likely to access the medical system for treatment. 3,5 Black men receive the least care for headache diseases nationwide and are less likely to present for ambulatory care for migraine compared with Whites. 6,7 Black patients are less likely to be given pain medications than White patients despite similar self-reports of pain. 8-10 To our knowledge, there are no examples of headache researchers addressing the challenges to inclusion of diverse populations in headache clinical trials. The authors are aware of only three research studies published that specifically examined for racial health disparities in headache medicine. [11][12][13] These studies could be classified as first-generation health disparity research. 14,15

A qualitative evidence synthesis of patient perspectives on migraine treatment features and outcomes

“…Diversity, equity, and inclusion efforts such as developing guidelines that include a representative sample of population from a racial, ethnic, socioeconomic, and gender standpoint, are ongoing to help address this issue in migraine research 68 …”

“…67 Where this feature is present, the patient feels they are in a participatory conversation, that they "now have options" (quote 1.17). 68 Related to processes that provide migraine knowledge and treatment options, patients in a focus group study explained their preference for a holistic approach because it helps them learn how non-headache areas are connected to migraine and/or that such areas can improve (e.g., posture, jaw, and migraine attacks). 69 6.…”

Black Patients Matter in Neurology

“…Community-based participatory research (CBPR) is one approach that improves engagement of underrepresented populations in medical research and may help to overcome the mismatch between researchers' goals and methods and the needs of the Black community and other marginalized groups. 36 CBPR centers on a partnership between community members and the academic team, who share responsibility in intervention development, implementation, and analysis. CBPR has been used successfully to engage marginalized populations in stroke research, 37 but it is not applied broadly in neurology.…”

Strategies for Behavioral Research in Neurology: Lessons Learned During the COVID-19 Pandemic and Applications for the Future

“…For years, trials in neurology have struggled to include underrepresented populations [ 20 , 21 , 22 ••, 23 ••], resulting in diverse groups receiving decreased access to therapies offered in studies, as well as limiting the medical field’s ability to interpret study results [ 24 ]. The pandemic further impacted study recruitment, as traditional routes (e.g., flyers, brochures, and word of mouth, and routine in-person clinical visits) were affected by stay-at-home orders and social distancing [ 25 ].…”