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Purpose of Review Breast cancer disproportionately affects racial/ethnic minority women compared with their non-Hispanic white counterparts. Community-based researchers have long sought to reduce breast cancer-related health disparities using the core principles of community outreach and engagement. The primary goal of this paper is to discuss community outreach and engagement (COE) strategies in the context of breast cancer disparities and discuss evidence-based applications of COE. Recent Findings Evidence-based COE to address breast cancer disparities include patient navigation, co-development of community-based interventions, advisory boards, and patient boards. Recent strategies have included partnering with the Komen Tissue Bank, the development of culturally tailored expressive writing interventions, and the formation of community scientist and community mentorship programs. Summary Partnering with the community across all stages of research can help eliminate breast cancer disparities. We find that community outreach and engagement can improve intervention efficacy, clinical trial retention, and community commitment. We hope that this paper will promote greater adoption of evidence-based COE strategies to help eliminate breast cancer disparities. . . . Keywords Breast cancer Health disparities Community outreach Community engagement Introduction contributes to these disparities. Thus, eliminating breast can- cer disparities are a significant public health concern. Breast cancer alone accounts for 30% of female cancers  It is well-understood that the hope of reducing breast can- and disproportionately affects specific groups. African cer disparities requires an understanding of what is happening American women have the highest rates of breast cancer mor- in affected communities through engagement of key stake- tality compared with all racial/ethnic groups and lower 5-year holders and community members who are dedicated to im- relative survival compared with white women . Among proving the health of their communities. The principles of Hispanic women, breast cancer is diagnosed at later stages community outreach and engagement are vital to conducting  and is the leading cause of cancer-related death . successful research with underrepresented communities. Notably, both African American and Hispanic women are Community engagement is defined as mutually beneficial ac- more likely to develop triple-negative breast cancers com- tions or values that promote shared respect, authenticity, and pared with whites [5, 6]. A complex interaction of biological, power sharing between researchers and community members sociopolitical, economic, and environmental factors [7–9]. This type of approach allows for bi-directional knowl- edge sharing that not only aims to incorporate community voices throughout the research process but also allows for researchers to engage in self-learning . In contrast to the This article is part of the Topical Collection on Breast Cancer Disparities bi-directionality of community engagement, community out- reach is the strategic coordination of multiple stakeholders to * Lorna H. McNeill locate, contact, and recruit difficult to reach community mem- email@example.com bers to engage in public health related activities. Community outreach often requires the coordination of multiple stake- Department of Health Disparities Research, University of Texas MD holders such as community health workers, health educators, Anderson Cancer Center, 1400 Pressler St., leaders of community organizations, and academics. Houston, TX 77030, USA 210 Curr Breast Cancer Rep (2020) 12:209–215 Communities impacted by breast cancer must be fully include both researchers and practitioners [21, 22]. engaged in research, education, and programmatic/policy Frameworks have been developed to guide how researchers efforts to eliminate breast cancer disparities. Breast cancer can contextualize intervention components and research de- research has employed these principles in various ways. sign through community members’ lived realities. For exam- The purpose of the current paper is to highlight the impor- ple, based on IM Adapt  (adapted from Intervention tance of community engagement and outreach in reducing Mapping ), Highfield and colleagues designed an inter- breast cancer-related health disparities and discuss vention to improve mammography adherence for uninsured, evidence-based community engagement and outreach African American women in a new practice setting using mo- strategies such as patient navigation, community feedback bile mammography. Through a need assessment among local to inform interventions, and community and patient advi- African American women, the researchers identified salient sory boards that have been effectively used in efforts to logistical, emotional, and cultural barriers to mammogram up- reduce cancer-related health disparities. We conclude with take such as insurance, cost, transportation, fear of the out- novel community outreach and engagement efforts being come, anticipated pain during the screening, and the belief that currently implemented across the country. faith would protect them from cancer . Then, these iden- tified barriers were addressed in the intervention through var- Evidence-Based Community Outreach and ious strategies including role modeling (e.g., quotations from Engagement Strategies for Breast Cancer Disparities women in the community regarding barriers), correcting mis- information, persuasion (by culturally congruent navigator), Patient Navigation Since Dr. Freeman established the first and planning with navigator to cope with logistical barriers. patient navigation program at Harlem Hospital Center in Community engagement strategies can be used for all inter- New York City for underserved women (racial/ethnic minor- vention pathways including conception/planning, promotion, ities, poor, uninsured) in early 1990s , the program’sre- recruitment, implementation, retention, evaluation, outcome, markable success in enhancing breast cancer outcomes (e.g., and dissemination/capacity by engaging community members improvement in early-stage breast cancer detection and sur- and stakeholders, which is key to achieve sustainability. vival)  launched patient navigation as a promising way to reduce breast cancer disparities. Patient navigators are often Advisory Boards/Patient Boards One of the most prominent lay community members seeking to identify and reduce pa- examples of community engagement has been patient/ tient barriers encountered in seeking diagnosis and treatment stakeholder and community advisory boards. Advisory boards [11, 13]. They facilitate healthcare access and quality for un- are often used in community-based research as a mechanism derserved populations through advocacy, care coordination, to provide structure to the partnership and guide the research . They are typically comprised of individuals that are as trust building, and empowerment within the communities they serve . For example, patient navigators assist in financial representative as possible to the target research community or and insurance-related issues, coordinate appointments and population, with their expertise sought throughout the re- care among multiple cancer providers, and train patients to search process. Functions of advisory boards include brain- self-advocate within the healthcare system . storming and identifying research questions; creating concep- To date, studies have consistently demonstrated that patient tual frameworks; advising on research study design, data col- navigation can effectively enhance certain breast cancer- lection and implementation; evaluating study materials; help- related screening, diagnostic, and treatment initiation out- ing to disseminate information; and collaborating with inves- comes. For example, patient navigation has been shown to tigators to advocate for policy change [25, 26]. Advisory increase breast cancer screening uptake [16, 17], decrease de- boards have been used broadly for community engagement lays in breast cancer diagnosis [17–19], and increase early across the breast cancer continuum. Typically, members are treatment initiation  among underserved women. To fur- a mixture of cancer survivors, advocates, oncologists, com- ther reduce breast cancer disparities, future directions of pa- munity leaders, service providers, and professionals specific tient navigation should focus on breast cancer survivorship, to the intervention. The Breast Cancer Prevention Trial, for and end-of-life care is much warranted. example, formed a national patient advisory council com- posed of trial participants to provide advisement on the trial, Intervention Development “Whatever the question, the an- share their experiences as participants, and provide patient swer is in the community” . Community engagement is education . Advisory boards have been employed, for vital in developing and implementing effective interventions example, in the design of breast cancer decision aids for sur- to reduce breast cancer disparities. Evidence-based interven- gery  and radiation treatment , to develop interven- tions show better outcomes when the intervention is adapted tions for stress management in newly diagnosed Latinas with and tailored to the community through partnerships that breast cancer , to help inform a culturally sensitive video Curr Breast Cancer Rep (2020) 12:209–215 211 for Chinese women to promote mammography , and to breast tissue samples from diverse healthy women, inform survivorship care planning . strengthened relationships with community leaders and or- ganizations, established new community relationships, and Two Illustrative Case Studies paved the way for biobanking research in the future. Diversity by Design: Strategies to Engage Minority Expressive Writing to Improve Quality of Life Breast cancer Communities in Biomedical Research Despite the congres- incidence rates are increasing among Asian American sional directive and NIH policytoinclude minorities and women [33, 34], and Asian immigrant breast cancer survi- women in NIH-funded clinical research, biomedical re- vors have a higher mortality rate than their US-born coun- search currently does not have adequate representation of terparts . Asian Americans are less likely to be enrolled diverse populations, particularly biobanking protocols. A in research compared with other ethnic groups . group of Indiana University breast advocates sought to Common barriers to participating in research include mis- increase biobanking for breast cancer and collected 750 trust of institutions , the fears of being a “guinea pig” blood samples at Komen’s Race for the Cure in , a lack of exposure to research studies , concerns Indianapolis in 2005. While many healthy women were about time commitment , and limited English profi- willing to donate their breast tissue, over the years, the ciency . Overcoming these barriers is extremely impor- percentage of minority donors was low. The Komen tant in eliminating health disparities. To illustrate relevant Tissue Bank is part of Indiana University, Indianapolis, strategies in engaging community members, we provide a Indiana. It is the only biobank in the world that collects case study of implementing a randomized controlled trial healthy breast tissue for researchers around the world to among Chinese immigrant breast cancer survivors using a use as normal controls in their breast cancer studies. In community-based participatory research (CBPR) approach 2014, the Susan G. Komen Breast Cancer Foundation’s  to implementing the study. The study was designed Houston affiliate leads the planning of a Komen Tissue and implemented in collaboration with Herald Cancer Bank community event to expand exposure of this issue Association, a non-profit organization serving the beyond the Midwest and increase the amount of healthy Chinese immigrant population in Southern California. tissue from diverse women. The challenge was to collect Chinese culture is a “relational culture” ; therefore, breast tissue from 200 diverse women in the Greater we took a relational approach to engage community mem- Houston area. bers. We approached recruitment as an opportunity to Recognizing the importance of engaging the communi- build relationships with potential participants. ty, i.e., racial and ethnic minority women, in this process, Community research staff acted as relationship builders Komen partnered with the Center for Community-engaged and recruiters, reducing the power differential that often Translational Research (CCETR) at MD Anderson Cancer exists between academic researchers and research partici- Center—which brings researchers and communities to- pants, particularly for an immigrant sample with limited gether to create long-term solutions to prevent cancer and English ability . Recruiters’ first priority was to estab- improve the health of communities—andwithstrong part- lish an environment in which individuals felt personally ners in the Houston faith community. To begin, we held cared for. Prior to any mention of the study, recruiters community information sessions with church leaders to get took time to inquire about the individual’slifeand listen their input on how to implement the event in Houston. This to her. This approach was important as it helped re- group hosted committee meetings, guided the planning, searchers to build trust and understand potential barriers and identified others to bring to the table to ensure success. to participation. Throughout the process, recruiters fo- Suggested strategies included a focus on awareness and cused on relationship building, understanding difficulties education, addressing fears, including church auxiliary and challenges potential participants were going through, ministries in this combined effort and being a constant and helping them to overcome challenges for participa- presence at every church event/meeting (Worship, Bible tion. As a result, the study had a successful 81% enroll- Studies, Ministry Meetings). The committee developed ment rate. We ensured study materials were culturally promotional materials and provided guidance to the com- appropriate and included native Chinese speakers from munications teams at the Komen Tissue Bank regarding multiple Chinese-speaking countries (China, Taiwan, marketing to African American women, including collab- Hong Kong) and represented proficiency with multiple oration with a local celebrity survivor and talk show ap- dialects (e.g., Mandarin, Cantonese) and character forms pearances. The Komen Tissue Bank received an over- (i.e., traditional, simplified). Documents such as recruit- whelming response from diverse women in the Greater ment scripts and interview guides that were more conver- Houston area. They achieved their goal of collecting 200 sational in nature were originally written in Chinese to 212 Curr Breast Cancer Rep (2020) 12:209–215 maintain native phrasing and sentence structures. All ma- communities, with evaluations indicating that feedback terials were piloted with a focus group of female Chinese enhances research quality and community members feel- breast cancer survivors recruited through a local non- ing the program being worth their time [44, 46]. Programs profit organization serving Chinese cancer patients. with goals similar to community scientist have unique advantages over traditional methods of engagement. New Community Outreach and Engagement Community members are engaged on an as-needed basis Strategies and thus do not have to commit their time to the ongoing meetings that may be required with service to an advisory Although most US cancer centers have long focused on board . Community scientist training includes advoca- impacting the health of the population in their catchment cy and empowers community members to feel confident areas, outside of cancer treatment, including prevention sharing their perspectives. This counters potential weak- and education efforts, the NCI continues to reinforce the nesses in advisory boards as community members may importance of this mission and obligation of cancer centers not have an experience working with researchers and feel to engage diverse populations within their catchment in uncomfortable sharing their thoughts and opinions [25, cancer center research. Community outreach and engage- 29]. ment (COE) offices seek to reduce cancer burden in their catchment area through education, outreach, and engage- Community Mentors Mentors are an integral part of training ment. Novel community engagement strategies are being and education in research. Mentors share new knowledge implemented in COE offices across the country. and skills in a specific area and provide guidance and sup- port to ultimately help trainees achieve independence. Community Scientist Program Resources and infrastructure Mentorship has been noted as the single most important to support community engagement are necessary, such as indicator of future success . While no one would ques- a comprehensive and diverse network of community part- tion the importance of research mentors in academic re- ners (breast service providers, community clinics, advoca- search, the importance of community mentors, and their cy organizations, community health professionals). role they play in research mentorship team, is often Creating and maintaining such networks are extraordinari- overlooked, likely because few research teams include ly labor-intensive and time-consuming, with most re- community mentors. Community mentors are people who searchers not having the time for such investment. One understand and/or know the lived experiences of the peo- approach facilitates a coordinated encounter between re- ple we are trying to serve through research; they connect us searchers and communities that stimulate communication, to communities directly affected by our research. Known as Patient Advocates, or community advisory board mem- particularly about research design and development. Termed “community scientist” at MD Anderson, or “en- bers, community mentors should be an integral part of re- gagement studios” at Vanderbilt, it is an approach that search teams seeking to eliminate breast cancer disparities. stimulates bi-directional communication between re- Similar to research mentors that teach research fundamen- searchers and community members [44, 45]. The tals and are context experts, community mentors share Community Scientist Program is a network of community knowledge about how to partner with breast cancer com- members representing vulnerable population groups who munities and those at-risk, may provide access to those meet monthly with researchers to consult on the design, affected by breast cancer, and provide greater context to implementation, and dissemination of their research. the importance and relevance of their research to the elim- Community members, who are already natural advocates ination of breast cancer disparities. As part of the research for issues within their community, receive training on hu- team, they should be included in research team meetings man subjects, biomedical research, and methods of com- and can evaluate research proposals and studies for com- munity engagement to prepare them to consult with re- munity relevance. Community mentors should be seen as searchers. Community scientists serve as a sounding equal to research mentors, because they bring complemen- board to ensure that research addresses local patient and tary, unique expertise to the research experience. Every community stakeholder interests, provide advice on the breast cancer disparities training program should consider development of culturally appropriate studies and recruit- the mandatory inclusion of community mentors as part of ment strategies, provide input on research questions, and the research team. study designs. Researchers benefit from access to commu- nity experts from various backgrounds, receipt of feed- Clinical Trial Patient Navigation Increasing clinical trial par- back at different stages of the research process, and expert ticipation among racial and ethnic minorities is upmost consultation for participant recruitment. Such programs concern . While racial and ethnic minorities indicate have been well received by both researchers and willingness to participation in clinical trials, their Curr Breast Cancer Rep (2020) 12:209–215 213 Human and Animal Rights and Informed Consent This article does not participation is still low relative to whites. In breast cancer contain any studies with human or animal subjects performed by any of research, where female participation is rather robust, com- the authors. pared with other cancer sites, i.e., colorectal cancer, racial Open Access This article is licensed under a Creative Commons and ethnic minority participation is still lower than whites Attribution 4.0 International License, which permits use, sharing, adap- . Innovation in community engagement for clinical tri- tation, distribution and reproduction in any medium or format, as long as al recruitment has focused on the role of clinical trial pa- you give appropriate credit to the original author(s) and the source, pro- tient navigators. Similar to patient navigation as described vide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included earlier, clinical trial navigators help to increase knowledge in the article's Creative Commons licence, unless indicated otherwise in a and awareness about clinical trials, facilitate access to and credit line to the material. If material is not included in the article's potential enrollment to a clinical trial, and reduce barriers Creative Commons licence and your intended use is not permitted by to retention and study completion by addressing concerns statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this after enrollment . Recent studies show that their inclu- licence, visit http://creativecommons.org/licenses/by/4.0/. sion as part of the clinical trial team increases trial partic- ipation in cancer clinical trials. Fouad and colleagues at the University of Alabama at Birmingham employed clinical trial navigators as a mechanism to increase recruitment and References retention of African American to clinical trials and saw African American clinical trial participation increase from 1. Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer 9 to 16% during the study period (2007 to 2014) [51, 52]. 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Current Breast Cancer Reports – Springer Journals
Published: Sep 15, 2020
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