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.11–13 These studies could be classified as first-generation health disparity research.14,15 In addition, there is one narrative article that addresses the issues of equity of African-American men in headache medicine.1 There are frameworks to guide health disparity research found outside headache medicine literature; for example, the National Institute of Aging developed an interactive easy-to-use NIA Health Disparities Research Framework on their website.14–16

___Representation in research begins with research design and recruitment. The National Institutes of Health (NIH) Revitalization Act of 1993 required that NIH-funded clinical trials include participants of diverse race and/or ethnicity and assess outcomes by race or ethnicity due to the observed underrepresentation of Black, Indigenous, and people of color (BIPOC) in clinical trials.17 The NIH requires planned enrollment tables, which include this information. However, as of 2018, only 13% of published results of publicly funded clinical trials include analysis of outcomes by race or ethnicity.18 In a systematic review of migraine treatment trials, all the articles reported sex frequency, but only 69.4% reported ethnicity or race.3 No studies examined safety or efficacy stratified by race or sex.3 Headache studies need to account for race and ethnic inclusivity. Although certain sociodemographic factors have been identified as risks for migraine (e.g., low socioeconomic status), headache medicine lacks comprehensive evidence from inclusive populations of study.19,20 (from Introduction)