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 because of 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 through October 2019 that 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
The present analysis highlights best practices for reaching BSMW by examining by how effective various recruitment sources were at recruiting BSMW. Recruitment partners were grouped into several categories: (1) cancer focused, (2) Black women or sexual minority women focused, (3) BSMW focused, (4) social media, and (5) other. Then logistic regression was used to estimate the odds that a particular recruitment source category could recruit BSMW compared with other categories.
Results
Partnerships 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 (odds ratio, 26.43 [95% CI, 7.50–93.10]).
Conclusions
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.
INTRODUCTION/BACKGROUND
Black sexual minority women (BSMW) face significant breast cancer health inequities and are underrepresented in health research because of 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 preexisting disparities. Our scoping review of breast cancer research from 1990 to 2017 found limited representation of Black women and BSMW.1 Of 91 peer-reviewed articles, only 15 included Black/African American women in the study and discussed breast cancer care among both racial and sexual minority women.1 Only three peer-reviewed journal articles have examined breast cancer screening and treatment among BSMW, specifically.2-4 The largest study of breast cancer screening that included Black sexual minority women used the National Health Interview Survey data.2 The study included 113 BSMW, comprising 0.25% of the total study sample of 45,031 Black, Latina, and White women ages 40 to 75 years.2, 5
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 because of younger age of onset and longer time between mammograms.6-8 Sexual minority women also have higher risk of breast cancer compared with their heterosexual counterparts.9 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 because of low recruitment of these populations into health research.
The importance of community engagement of marginalized populations in the research recruitment process is well-documented.10, 11 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.12-14 From July 2018 through 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 SMW. Before the National Health Interview Survey 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) more than 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.12-14 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).
| Participants, No. | 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 and Medicaid (dual coverage) | 16 | 4.3 |
| Medicare and 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, SMW, 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 3989 followers and the private ZAMI NOBLA page, which hosts a network of more than 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 1: 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 coauthoring 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 health care experiences of the research team are important to note in the context of this study on BSMW and cancer care.
Phase 2: 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 preexisting 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 health care–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 3: 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 BSMW 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 SMW focused, (3) BSMW focused, (4) social media, and (5) other. The cancer focused category includes two nonprofit organizations that focus on breast cancer research. The Black- or SMW-focused category includes three organizations: one focused on sexual and gender minority health, one focused on cancer in lesbian, gay, bisexual, and transgender people, and one focused on Black cancer survivors. The BSMW 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.”
| Recruitment source (by category) | Black and White women recruited, all sexual orientations (No. ,% of total recruited) | Black women recruited (No. ,% of total recruited) | Sexual minority women recruited (No. ,% of total recruited) | Black sexual minority women recruited (No. ,% 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 | 65 (17.4) | 27 (16.7) | 38 (19.8) | 20 (24.4) |
| Social media | ||||
| 5. Other | 55 (14.7) | 29 (17.9) | 26 (13.5) | 21 (25.6) |
| Word of mouth/friend | ||||
| Conference | ||||
| Community group | ||||
| Other |
- a Columns should not be summed because 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 BSMW compared with 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 BSMW 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).
| 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 | .929 | 0.11–11.35 |
| 3. Black sexual minority women focused (including ZAMI NOBLA) | 26.43 | .000 | 7.50–93.10 |
| 4. Social media | 14.81 | .000 | 4.05–54.13 |
| 5. Other | 14.48 | .000 | 3.99–52.53 |
RESULTS
The Our Breast Health study screened 2798 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.
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 53 years, with a range of 35 to 91 years. The survey asked participants for race, sexual orientation, level of education, health insurance coverage, and geography (Table 1). In terms of race, 244 participants (65.2%) were Black and 130 (34.8%) were White. In terms of sexual orientation, 192 participants (51.3%) identified as sexual minorities and 182 participants (48.7%) identified as straight or heterosexual. A plurality of participants graduated from a 2- or 4-year college (41%) or completed graduate school (43%). Nearly all (93.5%) participants reported having health insurance coverage and the majority held some form of private insurance (47%). Participants resided in 37 different states; however, the most common states of residence were Georgia (22%), California (9%), and New York (9%). The representation of participants from Georgia was larger in this sample because the partner organization, ZAMI NOBLA, is based in 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).
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 BSMW 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 SMW were as successful at recruiting BSMW as Black women (odds ratio, 1.11 [95% CI, 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 (odds ratio, 26.43 [95% CI, 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 BSMW-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.
| 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 | 65 | $75 | $1.15 |
| Social media | |||
| 5. Other | 55 | $0 | $0 |
| Word of mouth/friend | |||
| Conference | |||
| Community group | |||
| Other | |||
| 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, which is 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 preexisting relationships with communities; therefore, when these organizations endorsed the research study, participants may have felt more trust in the researchers because of 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.15 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 the 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 that the recruitment strategy was reevaluated 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. Although 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.16 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.17 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.17 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 because of 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. Last, 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. Although 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. 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 these 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.11 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 nonbinary and are at risk of breast cancer. Additionally, future studies should explore the experiences of younger BSMW because this study’s participants were all aged 35 years and older and were aged 55 years on average.
CONCLUSIONS
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 longstanding community relationships. (3) Allocate sufficient time and financial resources for recruitment costs. (4) Iteratively evaluate whether recruitment efforts are meeting recruitment goals and restrategize 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.
AUTHOR CONTRIBUTIONS
Sophia R. Geffen: Writing-original draft, writing-review, editing, and data curation. Tonia C. Poteat: Conceptualization, funding acquisition, supervision, project administration, writing–review and editing. Lorraine T. Dean: Conceptualization, funding acquisition, methodology, project administration, supervision, and writing–review and editing. Jowanna Malone: Investigation, data curation, writing-review, and editing. Naomi Greene: Data curation and writing–review and editing. Mary Anne Adams: Conceptualization, validation, recruitment, and writing–review and editing.
ACKNOWLEDGMENTS
The authors would like to acknowledge all the community partners who contributed to the success of the “Our Breast Health: The Access Project” study. The findings of this analysis are a testament to their significant recruitment efforts and their connectedness to the communities they serve.
Funding was provided by the Johns Hopkins Bloomberg School of Public Health Faculty Innovation Fund. Naomi Greene was supported by a National Cancer Institute National Research Service Award (T32 CA009314). Lorraine T. Dean was supported by a National Cancer Institute Grant (K01CA184288) and a Sidney Kimmel Cancer Center Grant (P30CA006973).
CONFLICT OF INTEREST STATEMENT
The authors declare no conflicts of interest.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available from the corresponding author upon reasonable request.
