Hair loss is a primary reason why women with skin of color seek dermatologic care.1-3 In addition to physical disfigurement, patients with hair loss are more likely to report feelings of depression, anxiety, and low self-esteem compared to the general population.4 There is a critical gap in advocacy efforts and educational information intended for women with skin of color. The American Academy of Dermatology (AAD) has 6 main public health programs (https://www.aad.org/public/public-health) and 8 stated advocacy priorities (https://www.aad.org/member/advocacy/priorities) but none of them focus on outreach to minority communities.
Historically, hair in patients with skin of color also has been a systemic tangible target for race-based discrimination. The Create a Respectful and Open World for Natural Hair (CROWN) Act was passed to protect against discrimination based on race-based hairstyles in schools and workplaces.5 Health care providers play an important role in advocating for their patients, but studies have shown that barriers to effective advocacy include a lack of knowledge, resources, or time.6-8 Virtual advocacy events improve participants’ understanding and interest in community engagement and advocacy.6,7 With the mission to engage, educate, and empower women with skin of color and the dermatologists who treat them, the Virginia Dermatology Society hosted the virtual CROWNing Event on Hair Loss in Women of Color in July 2021. We believe that this event, as well as this column, can serve as a template to improve advocacy and educational efforts for additional topics and diseases that affect marginalized or underserved populations. Survey data were collected and analyzed to establish a baseline of awareness and understanding of hair loss in women with skin of color and to evaluate the impact of a virtual event on participants’ empowerment and familiarity with resources for this population.
The Virginia Dermatology Society organized a virtual event focused on hair loss and practical political advocacy for women with skin of color. As members of the Virginia Dermatology Society and as part of the planning and execution of this event, the authors engaged relevant stakeholder organizations and collaborated with faculty at a local historically Black university to create a targeted, culturally sensitive communication strategy known as the Framework for Advocacy and Community Engagement (FACE) model (Figure). The agenda included presentations by 2 patients of color living with a hair loss disorder, a dermatologist with experience in advocacy, a Virginia state legislator, and a dermatologic hair loss expert, followed by a final question-and-answer session.
We created pre- and postevent Likert scale surveys assessing participant attitudes, knowledge, and awareness surrounding hair loss that were distributed electronically to all 399 registrants before and after the event, respectively. The responses were analyzed using a Mann-Whitney U test.
All 399 registrants completed the pre-event survey; 115 (28.8%) and 189 (47.4%) identified as patients and health care professionals, respectively (Table 1). Overall, 137 (34.3%) respondents disagreed or strongly disagreed with the statement, “I am familiar with the various and specific resources for hair loss in women of color.” Treatments and resources emerged as prevalent themes when respondents were asked about information or support they wished they had on hair loss. Respondents reported self-esteem/self-worth, treatment efficacy, and lack of knowledge/understanding as the most challenging aspects for women with skin of color experiencing hair loss.
Based on preliminary pre-event survey data, we created a resource toolkit (https://bit.ly/vadermhairlosstoolkit) for distribution to both patients and physicians. The toolkit included articles about evaluating, diagnosing, and treating different types of hair loss that would be beneficial for dermatologists, as well as informational articles, online resources, and videos that would be helpful to patients.
Of the 399 registrants, 165 (41.4%) attended the live virtual event. The postevent survey was completed by 70 (42.4%) participants and showed that familiarity with resources and treatments (z=−3.34, P=.0008) and feelings of empowerment (z=−3.55, P=.0004) significantly increased from before the event (Table 2). Participants indicated that the event exceeded (84.3%) or met (15.7%) their expectations.