Engaging Black Sexual Minority Women in Breast Cancer Research: Lessons in Community Partnerships

Abstract

Background

Black sexual minority women (BSMW) face significant breast cancer health inequities and are underrepresented in health research due to historical and present-day exclusion. However, there exists no peer-reviewed literature on best practices for the inclusion of BSMW in cancer research. “Our Breast Health: The Access Project” was a national primary data collection study in June 2018-October 2019 which aimed to identify facilitators and barriers to breast cancer care among BSMW, and that successfully recruited the highest number of BSMW for any national breast cancer screening study at the time of its publication.

Methods

This present analysis highlights best practices for reaching BSMW by examining by how effective various recruitment sources were at recruiting BSMW. We grouped recruitment partners into several categories: (1) cancer focused, (2) Black women or sexual minority women focused, (3) BSMW focused, (4) social media, and (5) other. We then used logistic regression to estimate the odds that a particular recruitment source category could recruit BSMW compared with other categories.

Results

We found that partnership with community-based organizations led by and intended for BSMW were the most successful at recruiting BSMW, demonstrating the importance of an intersectional approach to recruitment. Community-based organizations focused on BSMW specifically were 26 times more successful in recruiting BSMW to the study compared with recruiting Black women who were not sexual minorities (OR=26.43, [7.50, 93.10]).

Conclusion

Successful recruitment enables breast cancer research grounded in the perspectives of BSMW, which can generate key findings that have the potential to remedy longstanding health inequities for this population.

Condensed Abstract

We found that partnership with community-based organizations led by and intended for BSMW were the most successful at recruiting BSMW, demonstrating the importance of an intersectional approach to recruitment. Community-based organizations focused on BSMW specifically were 26 times more successful in recruiting BSMW to the study compared with recruiting Black women who were not sexual minorities.

Introduction/Background

Black sexual minority women (BSMW) face significant breast cancer health inequities and are underrepresented in health research due to historical and present-day exclusion. When recruitment of BSMW into breast cancer research is insufficient, the experiences of BSMW are subsequently discounted in breast cancer research findings and best practices, which in turn can further exacerbate pre-existing disparities. Our scoping review of breast cancer research from 1990 to 2017 found limited representation of Black women and BSMW (Malone et al, 2019). Out of 91 peer reviewed articles, only 15 peer-reviewed articles included Black/African American women in the study and discussed breast cancer care among both racial and sexual minority women (Malone et al, 2019). Only three peer-reviewed journal articles have examined breast cancer screening and treatment among BSMW, specifically (Agénor et al, 2020; Washington & Murray, 2005; Matthews et al, 2013). The largest study of breast cancer screening that included Black sexual minority women used the National Health Interview Survey data (Agénor et al, 2020). The study included 113 BSMW, comprising 0.25% of the total study sample of 45,031 Black, Latina, and White women ages 40-75 years (Agénor et al, 2020; LGBT Demographic Data Interactive, 2019).

The inclusion of BSMW in breast cancer research is important for several reasons. Disparities exist in breast cancer screening and mortality among sexual minority women (SMW) and racial minority women. Black women are diagnosed at later stages due to younger age of onset and longer time between mammograms (Gorin et al, 2006; McCarthy et al, 2016; Warner et al, 2012). Sexual minority women also have higher risk of breast cancer compared with their heterosexual counterparts (Cochran et al, 2001). Research exists on the cancer-related disparities faced by SMW and racial minority women as separate populations. However, there is limited research on how simultaneous marginalization by race and sexual orientation affects breast cancer screening and follow-up among Black sexual minority women due to low recruitment of these populations into health research.

The importance of community engagement of marginalized populations in the research recruitment process is well-documented (Andrasik et al, 2021; Wang et al, 2017). However, there exists no peer-reviewed literature on best practices for the inclusion of BSMW in cancer research, specifically. The “Our Breast Health: The Access Project” (Our Breast Health) was an opportunity to further document successful practices for recruitment of BSMW into breast cancer research studies (Dean et al, 2021; Greene et al, 2020; Poteat et al, 2021). From July 2018-October 2019, the study enrolled sexually and racially diverse women with a history of breast cancer and/or an abnormal breast cancer screening test through several community-engaged recruitment strategies. Through community-based recruitment strategies, the Our Breast Health study successfully recruited 100 Black sexual minority women. Prior to the NHIS study of 113 BSMW, the Our Breast Health study had recruited the most BSMW of any breast cancer study. In the current analysis, we assess the most effective recruitment approaches to inform best practices for engaging BSMW in breast cancer research. Ninety-six BSMW met criteria for inclusion in the research study and 82 of these women provided recruitment source data and, thus, were included in the recruitment analysis. Our findings are intended to equip the research community to better engage and include BSMW in breast cancer research; however, these findings can be applied to the recruitment of BSMW into research on other cancers and other health issues.

Methods

The Our Breast Health study aimed to enroll 500 women, including at least 100 BSMW. Eligibility criteria included: (1) assigned female sex at birth and currently identifies as female; (2) over 35 years of age; and (3) received abnormal screening results within 2 years or received a breast cancer diagnosis within 10 years. Exclusion criteria were residence outside the United States and the inability to provide informed consent in English. Enrolled participants took part in a 30 minute online, quantitative survey. The purpose of the parent study was to identify intervenable factors associated with breast cancer screening and follow-up for BSMW. For this reason, the study considered those who received abnormal screening results – both those who had an abnormal result that never led to a cancer diagnosis and those who had an abnormal result that were later diagnosed with cancer. Details about the parent study have been previously published (Dean et al, 2021; Greene et al, 2020; Poteat et al, 2021). For the analysis of recruitment strategies, we examined a subset of participants, focusing on Black and White women who provided recruitment source data (Table 1).

Table 1.

Sample demographics (for participant reporting recruitment source, race, and sexual orientation)

	Number of Participants	Percentage of Total Sample
Race (N=374)
Black	244	65.2%
White	130	34.8%
Sexual Orientation (N=374)
Sexual Minority	192	51.3%
Straight or Heterosexual	182	48.7%
Education (n=373)
Elementary school	2	0.5%
High School or GED	56	15.0%
2 year or 4 year college	153	41.0%
Completed graduate school	162	43.4%
Health Insurance (n=370)
Medicaid only	35	9.4%
Medicare only	15	4.1%
Medicare & Medicaid (dual coverage)	16	4.3%
Medicare & private	63	17.0%
Private only	174	47.0%
CIGNA/CHAMPUS	5	1.4%
Other	38	10.3%
Not Applicable	24	6.5%

All members of the research team identify as Black women, sexual minority women, or BSMW. Therefore, each member of the research team held at least two shared identities with study participants. The study team also collaborated with multiple organizations to recruit participants. These organizations held trusted relationships with breast cancer survivors, Black women, SMW, and BSMW. One of these organizations, ZAMI NOBLA, will be referenced by name because their founder participated as a member of the research team and this community partner was an active participant in the recruitment process. The research team developed a Facebook page specifically for recruitment to our study. This page features a short video explanation of the study by the study investigators, both of whom identify as Black, cisgender women. Additionally, recruitment occurred through posted videos and recruitment information on the public ZAMI NOBLA Facebook page with 3,989 followers and the private ZAMI NOBLA page, which hosts a network of over 1600 Black lesbian women. All collaborators were engaged at various stages of the study and had varying degrees of involvement in the recruitment process. The study team also paid collaborators who were actively involved in recruitment efforts. We used the following approaches in working with these organizations.

Phase I: Community-based participatory approaches to recruitment

The study team engaged in collaborative, shared leadership practices with community leaders. For example, the team worked in close partnership with ZAMI NOBLA leadership at every step in the recruitment process. The founder/executive director participated as a member of the study team beyond recruitment efforts, including designing the study protocol, joining regular team meetings, interpreting research findings, and co-authoring publications. Recruitment approaches and study timeline were adjusted based on community feedback in real-time.

In addition to engaging the community, the research team also possesses lived experience that aligns with the aims of the research study. The principal investigators are both Black women, one of whom would have met study criteria for participation. Additionally, the primary community collaborator identifies as a BSMW and breast cancer survivor. The identities and healthcare experiences of the research team are important to note in the context of this study on BSMW and cancer care.

Phase II: Build stakeholder engagement and trust

The study team worked with organizations who held existing trust with breast cancer survivors, which facilitated participant engagement with the study. Specifically, the team worked with organizations and key community stakeholders who held strong relationships with breast cancer survivors who are Black women, SMW, and BSMW. One of the principal investigators held a pre-existing relationship with the primary community partner organization, having worked together on a prior research study. Additionally, trust was continuously built with organizations while working together to recruit participants. We built trust in various ways. The primary community collaborator attended every study team meeting and took an active role in all decision-making. To humanize the researchers, investigators included pictures of themselves on the recruitment website and recorded short videos, at the request of ZAMI NOBLA, introducing themselves and explaining why they were conducting this study. Study findings were reported back to ZAMI NOBLA in a virtual meeting for all members in which participants could interact directly with investigators and ask questions. In this meeting, two BSMW, who are ZAMI NOBLA members, spoke about their healthcare related experiences with breast cancer and why research is important. Study findings were also presented to Love Research Army in a separate webinar. Stakeholder feedback was also incorporated into the recruitment plan iteratively, which demonstrated to stakeholders that the study team valued their expertise and insights.

Phase III: Engage community influencers and experts

The study team worked closely with individuals who are well-respected in their communities. The Our Breast Health study is focused on the experiences of Black sexual minority women who are at risk of or were diagnosed with breast cancer. Therefore, community influencers and experts shared many of these same lived experiences as the participants in the study. These influencers and experts had strong social media followings and held longstanding relationships with their followers, many of whom are BSMW and breast cancer survivors. Collaborations with these influencers and experts may have enhanced trust in and respect for the study aims among potential participants which facilitated their engagement with the study.

This analysis seeks to assess the effectiveness of various recruitment collaborations to enroll BSMW. To demonstrate the effectiveness of different types of recruitment sources, we grouped recruitment partners into several categories (Table 2): (1) cancer focused, (2) Black or sexual minority women focused, (3) Black sexual minority women focused, (4) social media, and (5) other. The cancer focused category includes two non-profit organizations that focus on breast cancer research. The Black or sexual minority women focused category includes three organizations: one focused on sexual and gender minority health, one focused on cancer in LGBT people, and one focused on Black cancer survivors. The Black sexual minority women focused category includes ZAMI NOBLA and a social media influencer who is a BSMW and breast cancer survivor. The social media category includes participants who indicated being recruited on Facebook or other social media. The other category includes “word of mouth”, “conference”, “community group”, and “other.”

Table 2.

Recruitment by category (for participants reporting recruitment source, race, and sexual orientation)^*

Recruitment Source (by category)	Black and White women recruited, all sexual orientations (n,% of total recruited)	Black women recruited (n,% of total recruited)	Sexual minority women recruited (n,% of total recruited)	Black sexual minority women recruited (n,% of total recruited)
Total participants reporting recruitment source	374	162	192	82
1. Cancer Focused	161 (43.0%)	60 (37.0%	81 (42.2%)	3 (3.7%)
2. Black OR sexual minority focused	21 (5.6%)	18 (11.1%)	3 (1.6%)	1 (1.2%)
3. Black Sexual Minority Women Focused	72 (19.2%)	28 (17.3%)	44 (22.9%)	37 (45.1%)
4. Social Media  Facebook  Social Media	65 (17.4%)	27 (16.7%)	38 (19.8%)	20 (24.4%)
5. Other  Word of Mouth/Friend  Conference  Community Group  Other	55 (14.7%)	29 (17.9%)	26 (13.5%)	21 (25.6%)

^*Columns should not be summed as categories based on race and/or sexual orientation are not mutually exclusive.

We calculated sample demographics for each group, as well as odds ratios for the recruitment of Black sexual minority women compared to Black women who were not sexual minorities for each recruitment category (Table 3). We used a bivariable logistic regression to calculate the unadjusted odds that each recruitment category would recruit a Black sexual minority woman versus recruiting a Black heterosexual women. Each recruitment category was compared against a reference group of Cancer-specific outlets. This was intended to demonstrate how much better BSMW-focused outlets were at recruiting BSMW, specifically. This analysis allowed us to demonstrate the importance of considering intersectionality in the recruitment process. We also calculated the cost per participant as total cost paid to each recruitment source (when applicable) divided by the number of people successfully recruited. Our recruitment costs included direct payment to organizations and stipends for community research partners ($11,636.60). Additional costs not included in the analysis were incentive payments ($19,882.50), and salaries for individuals on the research team (which we could not disaggregate by recruitment source).

Table 3.

Odds of recruiting Black sexual minority women compared with Black women who do not identify as sexual minorities

Recruitment Category	Odds Ratio	P >|z|	95% Confidence Interval
1: Cancer Focused	Reference group	Reference Group	Reference Group
2: Black OR Sexual Minority Focused	1.11	0.929	[0.11, 11.35]
3: Black Sexual Minority Women Focused (including ZAMI NOBLA)	26.43	0.000	[7.50, 93.10]
4: Social Media	14.81	0.000	[4.05, 54.13]
5: Other	14.48	0.000	[3.99, 52.53]

Results

The Our Breast Health study screened 2,798 individuals, of which 851 were eligible and provided consent to participate in the survey (Figure 1). Analyses of the parent study focused on Black and White women participants only and there were 728 who matched criteria for the analytic sample. Of these 728 participants, 374 provided data on recruitment source, sexual orientation, and race. This recruitment analysis includes these 374 participants only.

Figure 1.

Recruitment flowchart with final analytic sample for the current study (participants who were eligible, consented, and provided recruitment source, sexual orientation, and race data)

In this recruitment analysis (n=374), the mean age of participants was 55 years, with a range of 35 to 91 years. The survey asked participants for level of education, health insurance coverage, geography, race, and sexual minority status (Table 1). In terms of race, 244 participants (65.2%) were Black and 130 (34.8%) were White. In terms of sexual orientation, 182 participants (48.7%) self-identified as heterosexual or straight and 192 participants (51.3%) identified as sexual minorities. Most participants completed graduate school (43%) or graduated from a two- or four-year college (41%). Nearly all (93.5%) participants reported having health insurance coverage and the majority held some form of private insurance (47%). Participants resided in 45 different states; however, the majority were from Georgia (15%), California (10%), and New York (9%). The representation of participants from Georgia was larger in this sample because the partner organization, ZAMI NOBLA, is based out of Georgia and recruited exclusively BSMW.

Our recruitment timeline shows various recruitment events, which organizations led these events, and the cumulative number of surveys completed at each time point, broken down by overall surveys and those completed by BSMW specifically (Figure 2). This timeline demonstrates the impact of events focused on BSMW on the number of surveys completed by BSMW, such as community-centered gatherings (e.g. Audre Lorde Scholarship Weekend Celebration), conferences, and media campaigns (e.g. ZAMI NOBLA podcast).

Figure 2.

Recruitment Timeline

As shown in Table 2, recruitment success is reported by the total numbers that each category recruited who were Black women (n=162), sexual minority women (n=192), or BSMW (n=82) (Table 2). The cancer-focused organizations category recruited the most Black and White women overall (n=161), making up 43% of all Black and White women recruited in this subsample. These cancer-specific organizations also recruited the greatest proportion of Black women and of sexual minority women, respectively. However, organizations focused specifically on Black sexual minority women recruited the largest proportion of BSMW (n=37), which comprised 45% of all BSMW in the study. Additionally, some participants who indicated they were recruited through social media, word of mouth/friend, or a community group were recruited through the BSMW-focused organizations’ efforts. Therefore, the total number of participants recruited through these organizations is larger than these data reflect.

General cancer focused organizations and recruitment sources that were focused on Black women or sexual minority women were as successful at recruiting BSMW as Black women (OR=1.11, [0.11, 11.35]). In contrast, organizations focused on BSMW specifically had a 26-fold odds of being more successful than these aforementioned categories in the recruitment of BSMW (OR=26.43, [7.50, 93.10]). Recruitment categories of “social media” and “other” both had 14 times greater odds of recruiting BSMW compared with general cancer organizations. However, these categories include individuals who were recruited through the efforts of other organizations, some of which focused on BSMW.

Cost is another consideration in the recruitment process. For this reason, we assessed the cost per recruitment category (Table 4). Recruitment costs were highest for the Black sexual minority women focused category ($89.72/participant recruited); however, costs were low overall at $27.10/participant across all platforms. Costs for the other recruitment source categories included $18.63/participant for cancer focused, $28.57/participant for Black or sexual minority focused, $1.15/participant for social media, and $0/participant for the “other” category.

Table 4.

Costs associated with various recruitment categories

Recruitment Source (by category)	Black and White women recruited, all sexual orientations	Total recruitment cost	Cost per participant recruited
1. Cancer Focused	161	$3000	$18.63
2. Black OR sexual  minority focused	21	$600	$28.57
3. Black Sexual Minority  Women Focused  (including ZAMI NOBLA)	72	$6460	$89.72
4. Social Media  Facebook  Social Media	65	$75	$1.15
5. Other  Word of Mouth/Friend  Conference  Community Group  Other	55	$0	$0
Total reporting recruitment source	374	$10,135	$27.10

Discussion

The purpose of the present analysis is to characterize the facilitators and barriers to recruiting BSMW into a research study on breast cancer prevention and treatment. This analysis shows that BSMW can be successfully recruited when an intersectional approach to recruitment is adopted, specifically when the recruitment team authentically engages and shares project leadership with organizations that specifically focus on the needs of BSMW and shares project leadership. Community engagement throughout the research process facilitated the successful recruitment of BSMW in the Our Breast Health study – the largest of any breast cancer screening study at the time of its publication. Community partners contributed credibility and real-world impact. Community partners held pre-existing relationships with communities; therefore, when these organizations endorsed the research study, participants may have felt more trust in the researchers due to their relationship with the community partners. Furthermore, all members of the research team shared at least two identities with study participants, including their gender identity, sexual identity, racial identity, or all three identities. Endorsements of the low trustworthiness of the US health care system exists across the breast cancer care continuum, and especially among minoritized populations (Mouslim M, Johnson R. Dean L, 2021). Therefore, it is critical that researchers partner with trusted community organizations to engage BSMW in cancer care research. Engaging minoritized populations in breast cancer research will take more effort to build trusting relationships and will require demonstration of trustworthiness on the part of the research team. Additionally, feedback from community partners grounded the assessment tools and potential findings in a real-world impact, thereby making them more valid.

This analysis of community-based recruitment efforts identified several facilitators of successful recruitment of BSMW. Collaborations were diverse and varied, including individual influencers, traditional social media recruitment, and partnership with community-based organizations. The study team engaged with organizations that had prior success recruiting SMW with breast cancer. Furthermore, sharing leadership with organizations focused on BSMW specifically was integral to recruitment success, namely the study team’s partnership with ZAMI NOBLA, which is a trusted organization led by and intended for BSMW. It is also important to note that the recruitment strategy was re-evaluated and adjusted iteratively through the research based on recruitment numbers and feedback from community organizations. Phase 1 of recruitment was more generalized, whereas phase 2 was more specific and focused exclusively on BSMW. This adjustment was critical to recruitment success and demonstrated that generalized recruitment alone may not have allowed the study team to achieve its recruitment goals.

The recruitment analysis also revealed that it is not enough to partner with organizations who focus on only one aspect of the target population’s identity. Organizations focused on the intersection of being a Black woman and a sexual minority woman were 26 times more effective at recruiting BSMW when compared with cancer organizations and organizations focused on Black women or sexual minority women more generally. While the confidence intervals were wide around this estimate, this finding indicates an important signal of the importance of intersectional approaches to the recruitment of BSMW in breast cancer research. The unique health-related experiences of BSMW are well-documented in the public health literature (Rao D, Andrasik M, & Lipira L, 2018; Calabrese SK et al, 2015). Therefore, this same intersectional understanding should be applied to research recruitment strategies.

Cost is an important consideration in recruitment efforts. This analysis found that the cost of recruitment was $27.10 per participant overall. In comparison, the cost associated with recruiting through the BSMW-focused sources was higher, at $89.72 per participant. However, these sources were 26 times more effective at recruiting BSMW than the other recruitment categories. No studies to date have quantified the cost of recruiting BSMW for breast cancer research. One study calculated the costs associated with recruiting marginalized populations into breast cancer research (Dew et al, 2013). This study focused on traditional recruitment methods in addition to public transportations ads and found higher costs associated with recruitment compared with our study. A total of $164,585 was spent to recruit 1196 potential subjects, averaging $137.61 spent per participant (Dew et al, 2013). Our findings suggest that more focused and intersectional recruitment efforts may yield higher engagement of BSMW and be cost-effective.

Despite these facilitators, the study team did encounter challenges to recruitment success. Though the overall goal of recruiting 500 women was achieved, recruiting BSMW took longer and extended the timeline of the study. This was likely due to several factors. Partner organization networks may have been saturated. Some organizations were already recruiting for other studies and community members may have felt research fatigue when approached with another study. There are also a limited number of organizations that serve BSMW with few focused on cancer care specifically. The study team approached some civic organizations about partnership; however, it was often challenging for these organizations to make the connection between their mission and the research and, thus, these organizations refused partnership. Lastly, homophobia may have impacted collaborations, as some organizations implied that they did not want to recruit for a study that discussed sexual minority status.

This analysis of Our Breast Health’s recruitment strategy is not without limitations. There was a high degree (49%) of missing data for recruitment source. While there were 728 Black and White women included in this subsample analysis, only 374 participants (51%) reported their recruitment source; however, BSMW were more likely to report a source. Out of 100 total BSMW initially recruited, 96 completed a study survey, and 82 provided information on recruitment source. This resulted in relatively small cell sizes and larger confidence intervals for the logistic regression of the odds ratios. Despite this, odds ratios in this analysis represent a critical signal of the importance of considering intersectionality in recruitment. Additionally, we did not collect recruitment source data for ineligible participants; therefore, we were only able to analyze recruitment data for eligible participants who provided this data.

Additionally, the recruitment source was asked in a “select all that apply” format. Therefore, participants could select multiple organizations or platforms to indicate how they were recruited to the study. Furthermore, this recruitment analysis did not discuss in depth the degree of equity that was achieved in academic-community partnerships (Wang et al, 2017). However, it is important to emphasize that community partners participated in shared decision-making, helped design recruitment materials, received payment, and shared authorship of publications. Additionally, certain factors were not considered in the analysis of recruitment success. Factors that could be considered in future analyses include geography and socioeconomic position.

This analysis provides helpful insights into the facilitators and barriers to community-based recruitment strategies for breast cancer research with a focus on BSMW. Future research should consider additional collaborations, ways to strengthen existing partnerships, and other populations that have been historically excluded from breast cancer research. Collaborations should focus on organizations that are specific to BSMW and include cancer prevention and treatment in their mission. Collaborations can be strengthened through shared partnership throughout the research process and dissemination of findings. Finally, many other minoritized populations have been excluded from breast cancer research, particularly individuals who were assigned female sex at birth and identify as transmasculine or non-binary and are at risk of breast cancer. Additionally, future studies should explore the experiences of younger BSMW, as this study’s participants were all 35 and older and were 55 years old on average.

Conclusion

Based on our successes, we recommend the following strategies for community-based recruitment of BSMW into breast cancer research studies: (1) Establish a diverse set of recruitment partners and share project leadership; (2) Collaborate with organizations that dedicate themselves specifically to BSMW and have long-standing community relationships; (3) Allocate sufficient time and financial resources for recruitment costs; and (4) Iteratively evaluate whether recruitment efforts are meeting recruitment goals and re-strategize as needed. Successful recruitment enables breast cancer research grounded in the perspectives of BSMW, which can generate key findings that have the potential to remedy longstanding health inequities for this population.