Advancing Community-Academic Partnerships to Achieve Breast Health Equity: Applying the Community-Based Participatory Model to Build Capacity for Sustained Impact

Abstract

Background

This formative study leveraged a community-academic partnership to identify barriers to care that are potential sources of breast cancer disparities in Black women. Through this partnership and using a Community-Based Participatory Research (CBPR) approach, our goal was to develop a community task force to inform future interventions aimed at addressing breast cancer disparities and increasing health equity.

Methods

We assessed gaps in care related to breast cancer in Buffalo, New York (NY), by collecting and analyzing qualitative data from focus groups and interviews with breast cancer survivors and breast navigation groups assessing barriers and facilitators across the cancer care continuum. We then used CBPR approaches to build a task force to develop an action plan addressing gaps in care.

Results

We conducted a thematic analysis of qualitative findings to understand barriers and facilitators to cancer care. Three main domains of themes emerged including medical mistrust, fear, and stigma; importance of patient navigation as a form of social support; and importance of faith and faith-based community. Finally, we presented findings to a newly formed community task force to validate data collected and set future priorities to address breast cancer disparities and increase breast health equity in our region.

Conclusion

We found that health equity is a critically important issue in cancer care and that developing culturally tailored interventions has the potential to improve care delivery and reduce breast cancer disparities. Learning from and working with community members helps set the future agenda related to health equity.

Plain Language Summary:

Our overall goal was to assess gaps in breast cancer care in Buffalo, New York, and to use community-based participatory approaches to build a task force to work towards breast health equity. Recent and historical data indicates that the Western New York community is facing a continued wide gap in breast cancer mortality trends between Black and white patients. We collected qualitative data to understand potential sources of inequity related to breast cancer and presented findings to a community task force to set future priorities to address breast cancer disparities and increase breast health equity in our region.

Precis:

Qualitative data was used to understand potential sources of inequity related to breast cancer. Findings were presented to a community task force to set future priorities to address breast cancer disparities and increase breast health equity in the Western New York community.

Introduction

In the United States (U.S.), there has been a disproportionate increase in breast cancer incidence rate in African American/Black (Black) women, and the breast cancer death rate is 39 percent higher in Black women compared to white women.¹ Cancer outcomes are improving, but disparities remain and are a pressing priority. Since the early 2000s, there has been a steady overall decline in cancer deaths in the U.S., although death rates continue to be highest in Black populations compared to other racial and ethnic minorities. ² Despite breast cancer mortality steadily declining over the last four decades, not all breast cancer patients have benefitted equally from this decline. ³ Reducing these striking disparities in breast cancer mortality requires a multi-pronged, multi-sector approach.

Although breast cancer screening rates in Black women are similar to white women, 9 percent of Black women are diagnosed with breast cancer when the disease is at an advanced stage, compared with 5 percent of white women. ³ Barriers and facilitators to breast cancer screening experienced by Black women are well documented in the literature. ^4–11 Barriers include inequities in health care access, insurance, health education, and cost in addition to fear, distrust of the medical system, and competing priorities.^4–10 Facilitators to screening include physician recommendation as a primary driver, recommendation from other health professionals (nurses), patient navigation, and mobile mammography programs.⁴ Although many interventions focus on addressing barriers to breast cancer screening, barriers and facilitators across the cancer care continuum need to be better understood in order to address structural inequities that exist in cancer care delivery.

Community-academic partnerships and Community-Based Participatory Research (CBPR) have moved to center stage in health interventions and implementation strategies emphasizing the importance of collaboration as equal partners across the research process. ^12–14 The CBPR approach has been used to address health disparities and cancer health disparities in underserved and marginalized communities, particularly to increase cancer screening uptake, improve research participation, and develop effective interventions. ^15–16 The CBPR Conceptual Model highlights four cross-cutting constructs: trust development, capacity, mutual learning, and power dynamics. ¹⁷ Previous studies have demonstrated successful use of CBPR to address cancer disparities by building capacity and having shared goals while understanding the challenges of power-sharing and participatory decision-making. ¹⁸ Using such a collaborative process helps to understand important system-level changes that address racial disparities and inequity in breast cancer and cancer care. ¹⁹ Additionally, leveraging community-academic partnerships and CBPR to deliver culturally tailored interventions has proven important to raising awareness and improving cancer screening participation.²⁰

Building upon this previous research, we used the CBPR Conceptual Model to leverage well-established community-academic partnerships to assess gaps in breast cancer care in Buffalo, New York (NY), where recent and historic data indicates that the region is facing a continued gap in breast cancer mortality trends between Black and white cancer patients. With these well-established community-academic partnerships, we collected qualitative data to identify barriers and facilitators to breast cancer care. We then developed a task force that included key stakeholder groups (community members, community-based organizations focused on breast cancer, breast screening and treatment facilities) and used best practices to present and validate study findings and engage the community task force in developing an action plan to increase breast health equity across the cancer continuum.²¹

Buffalo, NY, has a growing population of 278,349 that is racially and ethnically diverse community, including 35.2% Black, 12% Latino, and a growing 10.4% foreign-born population.²² Buffalo also ranks fourth in the U.S. for number of children living below the federal poverty line (47.2%).²³ Poverty rates for Black residents are approximately four times higher than for white residents and are concentrated in a relatively small number of Zip codes where Black residents live, with over 80% of Black community members living in high poverty neighborhoods.^24–25 Structural disadvantage, segregation, and racism all contribute to the context in which solutions to cancer disparities must be addressed.²⁶ Our research focused on identifying what actions and changes to prioritize to address the disparity and inequity in breast cancer.

The National Witness Project, Inc. (NWP) is a National Cancer Institute (NCI) evidenced-based cancer control program using culturally competent, community-based breast and cervical cancer education designed to meet the specific cultural, educational, knowledge, and learning styles of medically underserved Black women.^27–28 The NWP has established community relationships since 2000, empowering breast cancer survivors to share their breast cancer journey and navigating women to breast screening. The NWP works closely with the First Ladies of Western New York (FLOW) to leverage the faith-based community. Members of FLOW represent several Black churches regionally that advocate for programs to improve the health of the community, increase health equity, and promote the importance of early detection of breast cancer. Using the CBPR Conceptual Model, we leveraged a community-academic partnership to build a task force to work towards breast health equity.

The goal of this qualitative study was to describe perceived barriers and facilitators throughout the breast care continuum from screening, diagnosis, and treatment through survivorship from the lens of breast cancer survivors and patient navigators. We conducted focus groups and semi-structured interviews with breast cancer survivors and breast cancer navigators to identify barriers to care that are potential sources of inequity and breast cancer disparities. Findings from these focus groups and interviews were then presented to our multi-stakeholder task force to elicit discussion in developing a community-owned action plan to increase breast health equity.

Methods

Leveraging our community-academic partnership, we assembled a study team that included the principal investigator (KG), program lead (DJ), project coordinator (CD), and community advisor (NH) to design data collection instruments and procedures, as well as to support study recruitment and participation in community task force meetings. The study team met bi-weekly throughout the grant. We conducted interviews and focus groups with breast cancer survivors and navigation groups to identify barriers and facilitators to care across the cancer care continuum. The NWP facilitated a community-based approach to data collection for the study that centered on community perspectives and priorities.

The NWP and FLOW led recruitment of breast cancer survivors and breast patient navigators for focus groups. Cancer survivors were recruited through NWP’s network of survivors to identify participants that have been navigated through their various programs. Cancer survivors were contacted through Facebook Messenger and phone calls and informed of the study. Using a snowball sampling strategy, additional survivors were referred to NWP staff to be contacted and informed of the study by participating cancer survivors. Patient navigators were recruited based on professional connections with mammography facilities and community programs. The NWP Director contacted these organizations by phone and email to inform them of the study and request participation and contact information (phone and email) for prospective navigators. NWP staff contacted navigators to explain the study and schedule an interview or focus group date. The study was overseen by the Roswell Park Comprehensive Cancer Center Institutional Review Board (IRB # 629420), and all participants provided verbal consent.

The NWP engaged participants in focus groups and interviews by leveraging use of technology and rapid uptake to video conferencing applications to connect due to the pandemic. We employed strategies to make the focus groups inclusive and welcoming, for example participants were provided detailed instructions through email and/or phone call or accessing the virtual conferencing technology without requiring the additional steps of downloading the application.. If a participant was not able to attend a focus group, the option to participate in a one-on-one interview was offered. A total of five focus groups and five one-on-one interviews. One-on-one interviews lasted between 15–35 minutes. Focus groups lasted between 40 to 75 minutes, depending on the number of participants. The number of participants in focus groups varied between three and six, with a total of 27 participants.

Focus groups and interviews were separated into two distinct groups: breast cancer survivors and breast patient navigators. Our sample included 14 breast cancer survivors and 13 breast patient navigators. All breast cancer survivors self-reported as Black and most were women (92%). All breast patient navigators identified as women and came from diverse racial and ethnic backgrounds, including six identifying as Black (46%), three as white (23%), three as Latina (23%), and one who identified as a different racial identity that we are masking to protect participant confidentiality. All data were collected between May and October 2020. Our lead interviewer (CD) facilitated focus groups and interviews using the same interview guide (Appendix A). Study questions were used to guide the conversation and prompts were included to capture difference barriers and facilitators across the cancer care continuum. All activities were conducted virtually (Zoom). Interviews and focus groups were recorded and transcribed verbatim. Participants received a U.S. $20 gift card upon completion of a focus group or interview.

Focus groups and interviews were transcribed, and a thematic analysis was conducted by the principal investigator (KG) and lead interviewer (CD), reading each transcript, and using coding memos to highlight key ideas and themes. Each member coded independently to increase reliability.²⁹ Data analysis was guided by thematic analysis to categorize and identify themes. Themes were identified based on frequency as well as context and meaning for each group of respondents.³⁰ Preliminary themes were summarized and presented to the community task force to validate findings (Table 1).

TABLE 1.

Qualitative themes from focus groups/interviews.

Domain Source		Breast Cancer Survivors	Patient Navigators
Screening	Barriers	Lack of education related to breast health; medical mistrust; delays in screening (>2 years between mammograms); inaccurate results and missed diagnosis	Not receiving screening results for further navigation (no patient authorization); patients missing follow-up; delays in scheduling; social determinants of health/life in the way; changes in contact information, PCP not always receiving results; fear; mistrust the medical system; traumatic family experience; insurance status
	Facilitators	Doctors recommended appropriate screening; clear decision on screening location; strong faith; second opinions	Community navigation approach (e.g., community centers and churches); communication/direct contact; designated screening days/events for women navigated; same day scheduling/walk-in appointments; same day results; transportation and interpreters, partnerships with PCPs; Health Information Exchange for access to records; NYS Cancer Services Program (CSP) for insurance barrier; consistency, trust, relationship building & follow through
Diagnosis	Barriers	Negative experience with the healthcare system; delays in care; fear and anger; pain; guilt (missed mammograms)	Trust in doctors; same day biopsy; social support; strong faith; kind staff
	Facilitators	Navigation and advocacy; social support; community resources; faith community; navigation with insurance and financial resources; supportive care services	Navigation from screening to diagnosis; simple language for low health literacy; patient authorization to follow up on results; encouraging/celebrating successful screening and negative results; comfort, support, & supportive care services; PCP engagement; CSP for uninsured/underinsured; communication
Treatment	Barriers	Non-adherence to treatment (“felt sick”); access to genetic testing; difficult transitions of care between systems; negative self-image (feeling “disfigured” or “deformed”); need for nutrition/exercise/self-care resources for Black women; worry	Healthcare system difficult to navigate; need for oncology navigation/hand off; navigation stops at screening
	Facilitators	Navigation and advocacy; social support; community resources; faith community; navigation with insurance and financial resources; support services	Knowing needs of patient (e.g., what they can afford, if they can work, what support they need); navigation/linking patient to appropriate resources; specialized support services (free wigs, hair and nail care, support groups, gift cards, referrals to community and cancer resources); Chemo care bag (cancer education materials, inspirational information, puzzle books, hard candy, hand sanitizer, crystalized ginger for upset stomach, lotion); partnerships with oncology facilities/hospitals
Survivorship	Barriers	Knowledge gap of survivorship care; attitude towards not discussing private matters; need for supportive care during treatment not just after (nutrition, exercise, muscle loss, skin care, fatigue, living with the “new normal“)	Lack of understanding or awareness; taboo to discuss with family

Results

Breast cancer survivors and patient navigators identified various barriers and facilitators across the cancer care continuum (Screening, Diagnosis, Treatment and Survivorship). Since breast cancer survivors were recruited from the NWP cancer survivor network, survivors were invited to participate and share their experience regardless of length of time since diagnosis. Three main domains of themes emerged including medical mistrust, fear, and stigma; importance of patient navigation as a form of social support; and importance of faith and faith-based community.

Across the cancer care continuum, negative experiences with the healthcare system, medical mistrust, and traumatic family experience with cancer were a consistent theme in barriers to care. Taboos about discussing cancer, particularly family history, was also noted. When reflecting on the cancer experience, fear, anger, pain, negative self-image, worry, and guilt were themes. For example, one breast cancer survivor described barriers to establishing trust with health care providers and explained, “It’s hard. We don’t trust people easy and we really have to gain trust with people.” Another survivor described societal context as shaping attitudes towards cancer treatment and said, “We’re just forgotten and we’re invisible.” In this way, structural inequities and perceptions of social attitudes shaped this survivor’s perspective on experiences with breast cancer treatment. Participants also noted cultural norms about discussing cancer, and one survivor shared, “I just think that in most African American households, you don’t talk about what is going on. What’s at home stays at home.”

Survivors discussed feeling unprepared for lingering physical effects of cancer treatment and provided strategies to overcome mistrust, fear, and stigma as facilitators to care. For example, one cancer survivor stated:

“I think that part of my treatment should have been a month or two or three months learning how to eat better, how to medicate, how to exercise and something they never told me was that I was going to have all this muscle weakness where they radiated me. I had to have physical therapy two years ago on my whole upper right quadrant where they were giving me radiation. All the muscles in my chest, my forearms, arms and my hands and my back they were like getting smaller. They were so tight and it was because of the radiation. I think knowing that from the beginning that this is what you’re going to go through afterwards…I just felt like it should have been three more months of aftercare.”

It was also noted how some of negative experiences can be countered by kind staff, trust in doctors, and navigation efforts. One cancer survivor shared,

“But more than anything else, I remember being really, really, really, really, really scared, so when I got to the hospital. [The doctor in charge] had me, so that made me feel like, ‘Oh, thank you Jesus, you are really blessing me.’ First, they wouldn’t let me in, now I’m in and I’m with the [best].”

There was an additional emphasis on the importance of comfort, support, and supportive care services, particularly those tailored to Black women. As one cancer survivor explained,

“I just think that time when I was going through [treatment], they should’ve had more information for Black women. They didn’t have that. They didn’t have what we should put on our skin to make it smooth for the chemo, just to clean our skin. They didn’t have resources where you could go down there and pick you out a wig. They didn’t have that there. That right there upset me because how are you going to go somewhere and still have something for me. We got the Black people and I said, ‘Okay, listen. We need some wigs for these Black women.’ All they had in there was for white women. They had nothing for me.”

As this survivor describes, participants noted the importance of tailoring supportive care services specific to Black patients to overcome these barriers to care, which has the potential to enhance the patient experience and most importantly, improve clinical outcomes.

Survivors and navigators also noted the importance of advocacy, social support, and community resources, particularly through targeted patient navigation with insurance, financial, and other supportive resources. There was an emphasis on the community navigation approach and having open communication and direct contact. One navigator emphasized that “Navigation in this world is so important.” This was underscored by how important consistency, trust, relationship-building, and follow-through are to outreach efforts. For example, one navigator noted, “You go beyond the small things that to them are big things; they can’t do the translation and transportation and all that stuff.” The importance of navigation from screening to diagnosis was highlighted, although challenges were presented beyond screening navigation, particularly with transitions of care between complex health systems where patient authorization for results is required. One navigator noted, “We lose touch … we don’t know what happens after a certain point.” And from another navigator, “[After screening] That is where my road ends.” Groups also acknowledged that most navigation programs focus on breast cancer screening, identifying an opportunity to enhance navigation through treatment and survivorship. One navigator stated, “It was unbelievable that before [our program], there were little to no resources available for people who look like me… It’s not just one solution, it is multifaceted. We need to hit those supportive deserts.” Once again, participants noted the importance of tailored supportive resources specifically designed for and by Black women, but also identified an important gap in navigation beyond screening through the cancer care continuum specifically focused on diagnosis, treatment, and survivorship care.

Participants highlighted the importance of strong faith and the importance of support services from the faith community across the entire cancer care continuum. For example, numerous breast cancer survivors described the “Lord” as their main support, “My support was the Lord and my church family.” Additionally, leveraging churches and the faith-based community to raise awareness around breast health was perceived to be a key to success. For example, one cancer survivor shared, “I’ve been talking to groups at my church on breast cancer and how important [screening] is.” One cancer survivor discussed the importance of faith and starting her own support group to help women struggling with their appearance after surgery.

“Well, my support group was my faith, number one…I am in the process of having my own support…As soon as this [pandemic] is lifted, I will hopefully have everything up and running. For the women that are not happy and want more answers, we want to do things for those women and like I said, as a group, I want us to get up and do things and just know we’re beautiful no matter what your body may look like under your clothes. You are a beautiful person because beauty starts on the inside and that’s the one thing I want to focus on with the women that’s in my group.”

These examples highlight the importance of disseminating resources and support groups, including self-care, to the Black community through churches or community centers.

Breast Health Equity Task Force

As part of this community-academic partnership, a list of potential task force members was generated by the study team that included breast cancer survivors and community patient navigators that participated in the focus groups and interviews, as well as key stakeholders from local mammography and cancer treatment facilities and regional state-funded cancer services programs. Once data collection and analysis were completed, we set up a series of community conversations with our task force. Invitations to register for the event and calendar invites were sent via email to over 50 community members, resulting in 20 to 25 community members participating in each event. This task force was comprised of community members as well as those providing direct care and services to our local community to hear all voices in pursuit of breast health equity.

The intention of the first task force meeting was to first present and validate study findings from focus groups and interviews, and second to discuss potential solutions for a future community-driven action plan. Data analysis was first reviewed by the study team in January 2021 to ensure that materials would match the education level of the community and were culturally appropriate, and subsequently presented at the first task force meeting in February 2021 (KG and CD). A summary of barriers and facilitators across the cancer care continuum was presented verbally to the task force in a traditional slide deck format via Zoom. An open question and answer session followed allowing for task force members to provide feedback and respond to study findings. The presentation was recorded and emailed to those who registered for the event but were unable to participate, and a poll was taken on when to hold the next meeting.

Our goal was to validate findings to inform future interventions aimed at addressing these disparities and increasing breast health equity. The second task force meeting in March 2021 provided an abbreviated version of study findings and a more enhanced conversation to further refine opportunities to address gaps in care and increase breast health equity. The task force identified five main areas of improvement related to breast health equity for future development including enhanced patient navigation, systems change, policy change, data monitoring, and future funding opportunities. We subsequently queried interest from community task force members using a post-evaluation survey (19 responses) to refine the priority areas of improvement while study team members pursued further funding to continue these efforts.

This approach emphasized the premise of CBPR, that it is important to consider trust development, capacity building, mutual learning, and understanding power dynamics. Given historic mistrust and structural health inequity, this community-academic partnership was critical in building and maintaining trust with the community, especially during a global pandemic. Bringing together a task force provided multiple perspectives and allowed us to assess existing capacity. Given the approach to sharing and validating findings, the concept of mutual learning allowed different perspectives to come together and set the foundation for a future action plan. Having this community-academic partnership with the NWP leading was the key to our success as it provided a neutral space to gather all perspectives, creating an opportunity for all voices to be heard removing any traditional power structures that exist in academic medicine and healthcare. Understanding these themes helps identify local community priorities and directions for interventions to address breast health equity.

Discussion

Community-academic partnerships and CBPR are critical in reducing barriers to care and increasing health equity.^12–16 This initiative, built best practices and collaborative engagement across multiple groups including community and community-based organizations,²¹ focused on breast cancer, breast screening and treatment facilities, and policy makers and state-funded entities. We gained momentum to move towards Breast Health Equity (BHE) in our region, and our goal is to continue working on the five main areas of improvement related to breast health equity for future development (patient navigation, systems change, policy change, data monitoring, and funding opportunities).

Our study found that patient navigation as well as system-level and policy-level changes need to support outreach efforts that are culturally tailored and meet community needs, demonstrating an important improvement opportunity across the cancer care continuum. Medical mistrust, negative experiences, and fear were commonly identified as an issue and are a key to addressing health equity overall. Although existing literature supports leveraging social and spiritual support networks as a solution to overcoming these barriers,^18,20,27 it is important to address systems and policy changes focused on cultural humility training for staff as well as a implementing a culturally tailored patient navigation across the cancer care continuum.

Patient navigation has been shown to be effective to increase breast cancer screening rates,^31–36 however our work found the need to enhance patient navigation in our region across the cancer continuum from diagnosis through survivorship, as existing navigation only supports screening efforts. Supporting patient navigation and survivorship across the cancer care continuum could address physical, psychological, social, and spiritual wellbeing that could lead to improved outcomes in cancer care and reduce cancer disparities. This paper makes an important contribution not only to CBPR literature, but also to health equity research based on these findings that could improve breast cancer outcomes by enhancing navigation that would increase health equity by proactively addressing barriers to care, increasing overall quality of life, and providing a whole-person approach through the cancer journey.

In terms of data monitoring and future funding, our findings indicated how knowledge of survivorship and supportive care was limited, presenting an opportunity for future education and enhancement. Survivorship models have been defined at comprehensive cancer centers,^37–39 but should include culturally tailored support programs. There is also a need to understand more about access and uptake to genetic counseling in our region, particularly to ensure equitable access to these important services. We continue to pursue future funding opportunities to support not only these five areas for future development and areas of opportunity that were identified but, most importantly, for continued support for this new formed task force that has implications beyond breast health equity.

Forming a community task force and validating results back through CBPR methods is an important contribution of this work. The intention for the task force is to meet regularly to set priorities, develop a charter, and set future agendas aimed at increasing health equity in our region, in addition to responding to community needs as they arise. While this initiative was successful during the pandemic, this study formed an important task force laying the foundation for community conversations and assessments, particularly in time of crisis. Although themes that emerged from this study have been documented in the literature,^4–11 this work provides a unique contribution in the community oriented and driven approach to achieving health equity that leveraged this community-academic partnership in developing and maintaining a community task force.

Limitations

The most significant limitation of this project was the impact of the COVID-19 pandemic, especially working in a virtual environment, which changes the dynamics of CBPR and community engagement. Discussing breast health and breast cancer with the community during the pandemic was not the highest importance given such challenging times. Though we accomplished the goal of this formative study, we hope to address these points in future initiatives, particularly as we find a new way forward. Our Breast Health Equity Task Force is planning an event in the coming months, although ongoing and downstream effects of the pandemic and recent local tragedy⁴⁰ continue to present challenges not only CBPR, but in bringing the community together for important conversations around health equity and racial issues, including disparities.

Conclusions

Health equity is a critically important issue in cancer care, particularly with breast health equity. Previous research has shown that learning from and working with community members is a promising strategy to develop sustainable and impactful strategies to improve breast cancer outcomes. Our findings point to three main themes that should be accounted for in strategies to enhance breast cancer equity, including medical mistrust, fear, and stigma; importance of patient navigation as a form of social support; and importance of faith and faith-based community. Future directions for this project include leveraging the task force to develop targeted interventions aimed to reduce breast cancer disparities and address breast health equity in our region based on data gathered through this study. Our breast health equity work continues to develop a future agenda and is strengthened by the knowledge gained in this study that demonstrates the importance of working together in strong community-academic partnerships to develop solutions.