Empowering Communities: Fostering Prostate Cancer Awareness and Resilience Among Men of Color

You have accessJournal of UrologyJU Forum4 May 2024Empowering Communities: Fostering Prostate Cancer Awareness and Resilience Among Men of Color Quoc-Dien Trinh, Muhieddine Labban, Danesha Daniels, and Adam Feldman Quoc-Dien TrinhQuoc-Dien Trinh Corresponding Author: Quoc-Dien Trinh, MD, MBA, Harvard Medical School, Department of Urologic Surgery, Brigham and Women's Hospital, Francis St, Boston, MA 02115 (email protected) https://orcid.org/0000-0003-3857-9276 , Muhieddine LabbanMuhieddine Labban https://orcid.org/0000-0002-4580-1915 , Danesha DanielsDanesha Daniels , and Adam FeldmanAdam Feldman View All Author Informationhttps://doi.org/10.1097/JU.0000000000003931AboutPDF ToolsAdd to favoritesDownload CitationsTrack Citations ShareFacebookTwitterLinked InEmail This article outlines our progression from scholarly research to an operational effort to address the racial disparities in prostate cancer (PCa) care through community engagement to improve early detection of PCa and access to definitive treatment. Our journey is shared as a blueprint for others interested in similar pursuits, aiming to spark conversation about the importance of community engagement in overcoming health care inequities. The incidence and mortality of PCa is higher among men of color, particularly Black men. While some suggest biological differences could contribute to this higher incidence, growing evidence, including our own research, indicates that disparities in access to health care significantly contribute to the mortality gap between Black and White men with PCa.1,2 Notably, research by Friedlander et al revealed that Black men are less likely to receive definitive treatment at nearly half of Commission on Cancer‒accredited hospitals.3 Collectively, data suggest that (1) Black men present with more advanced disease at diagnosis, emphasizing the potential role of early detection in outcomes, (2) access to care may mitigate disparities in PCa outcomes, and (3) understanding facilitators and barriers to receipt of care at treating hospitals could lead to meaningful interventions. The Massachusetts Department of Public Health Prostate Cancer Workgroup, active for the past decade, includes a diverse group of physicians, scientists, patients, advocates, and community leaders. The workgroup played an instrumental role in guiding our research and more recently in promoting community engagement to address racial disparities in PCa. The CDC describes community engagement as a systematic approach of collaborating with groups of people based on factors such as geographic proximity or special interests to address well-being issues and enhance individual and community health.4 Community engagement involves partnerships that facilitate resource mobilization, exert system influence, and drive transformative changes in policies and practices.4 Our collaboration with the workgroup has been one of our earliest joint efforts to lead research informed by the community including the development of a shared decision-making tool for PCa screening and hosting a webinar on PCa disparities with the Massachusetts Medical Society. In recent years, the workgroup has expanded its focus to include directing research. To investigate if racial disparities in health care access persist in the Commonwealth of Massachusetts, which has mandated near-universal health care coverage since 2006, we conducted a landmark analysis of the Massachusetts Cancer Registry with the workgroup's support.5 This analysis, led by Cole et al, found that despite the universal coverage, Black men were 33% less likely to receive PCa treatment compared to White men, particularly in counties with higher populations of communities of color.5 What's more, in a pivotal qualitative case study supported by the workgroup and funded by an American Cancer Society community grant we interviewed health care providers, community leaders, and institutional champions to explore the obstacles and enablers to accessing PCa treatment. Utilizing the workgroup's trusted networks, we engaged informants from various hospital systems across the state in a safe, nonjudgmental environment, encouraging open and honest dialogue. We identified several key challenges to equitable PCa care access, including the need to bridge transportation barriers, augment access to care through navigators and translators, and, more importantly, develop strategic community engagement initiatives to overcome physician and research mistrust. Our parent organization's decision to launch the United Against Racism (UAR) initiative provided us with an opportunity to transform this body of work into an operational effort designed to address these very stark disparities. Against a backdrop of escalating racial tensions and regulatory scrutiny, Mass General Brigham launched UAR, a comprehensive program aimed at confronting and eliminating the structures, practices, and behaviors that perpetuate inequality both within and beyond the organization, thereby ensuring the provision of superior health care services and equity for all individuals. The UAR initiative launched several pilot projects, including the Prostate Cancer Outreach Clinic (PCOC), founded in July 2021.6 We initiated this project knowing that to effectively serve minoritized populations and diminish medical and research mistrust, the PCOC must focus on building capacity and fostering mutual learning, alongside actively involving patients and their advocates in shaping the care provided.7 At launch, the PCOC focused on 3 main projects: (1) intense navigation with our community health worker accompanying patients in their PCa journey, (2) a focus on patient engagement events, in partnership with our community partners, and (3) developing a PSA safety net workflow. To tackle the fragmented health care system, this initiative focuses on employing dedicated community health care workers to intensively guide minoritized populations through the entire care spectrum. Their efforts are supported by a multidisciplinary team, including urologists, residents, nurses, and navigators, all allocating specific care time to the PCOC.6,8 Moreover, the community health care workers have spearheaded efforts to become a liaison with patients and their advocates among communities at risk of disparate PCa outcomes. By partnering with community-based organizations, the PCOC's providers have participated and led several educational events. By mobilizing our providers to be "boots on the ground," it has allowed us to further understand the social and physical environment that may be contributing to disparities and has catalyzed trustful relationships with members of the community.7 During these events, our efforts extend beyond fostering colearning and empowering communities to make informed care decisions. We also provide direct urological services, encompassing shared decision-making for PCa screening, conducting PCa screenings, and arranging initial or follow-up appointments for individuals previously treated for PCa who have been lost to follow-up. Similar opportunities have also allowed us to recruit patient advocates who have become integral members of our PCOC team to continuously improve and culturally attune the care delivered.8 Finally, we leveraged the PCa screening safety net, established by the institution's Department of Quality and Safety. This safety net identifies patients with abnormal PSA tests requiring either the establishment or reestablishment of care with a urologist at the PCOC. Community health workers proactively reach out to these patients to prevent them from being overlooked. Since the program began, 206 patients were scheduled for a visit, for 232 total visits, of whom 42% were Black and 20% had limited English proficiency. The success of patient retention lies in regular communication with the patient and facilitating geographical access by providing transportation services. The development of this initiative presented a mix of expected and unexpected challenges such as inability to hold events in the community due to the COVID-19 pandemic as well as challenges related to care including insurance logistics, financial and/or housing instability, and overcoming patient medical mistrust. As expected, overcoming medical mistrust emerged as one of the most formidable barriers. The collaboration with grassroots organizations proved pivotal in mitigating medical mistrust either by partaking in events that they had already organized or by broadening the reach of our events through their networks. Additionally, our consistent presence at these events demonstrated our unwavering commitment to the mission. Importantly, our focus on community engagement emerged as the most influential element of our strategy. Community engagement varies in form, from basic informing to deep collaboration and ultimately empowerment through shared leadership.4 The PCOC has progressively engaged with communities, starting with educational initiatives at places like places of worship, barbershops, and block parties. At these events, we have consistently gathered feedback to refine our approach and improve the materials we provide. Furthermore, we have brought grassroots organizations and patient advocates on board as full partners in every aspect of our research projects, from their inception and review to their implementation.9,10 These partnerships involve collaboration with experts in engaging marginalized communities, promoting a reciprocal exchange of information that centers on the health priorities of these groups.9,10 We believe those partnerships are critical in the design and recruitment of minoritized populations in community-based research that we have successfully funded by the Department of Defense‒Congressionally Directed Medical Research Programs. Looking ahead, we have formed a patient advisory board with a diverse group of individuals treated at the PCOC to shape future initiatives. Our collaboration with the advisory board has already led to the development of customized patient education materials specifically designed to meet the unique needs of marginalized communities, such as information on transportation options. Starting in fiscal year 2025, we hope to extend the safety net well beyond the initial PSA screening test, as gaps in care occur across the whole spectrum: missed appointments for imaging, biopsy, consultations, and treatments. Regarding the latter, in partnership with our patient advisory board, we are codeveloping a new multidisciplinary clinic for marginalized populations leveraging data on social determinants of health from electronic medical records, providing on-site availability for navigation and a social worker in addition to a multidisciplinary team of consultants with training in this field. As our efforts expand, we look for the support of philanthropy to build a true brick-and-mortar center of excellence, where shared leadership will empower communities to leverage their knowledge, experiences, and connections toward sustainable change. This center, in addition to providing clinical care, will serve as a platform for policy-related activities, including drafting bills, lobbying policymakers, and implementing policy changes. Ultimately, the objective is to translate our scholarly and clinical efforts into tangible policy change that would guarantee that disparities are not just acknowledged, but actively addressed through concrete measures on paper, all driven by the voices and needs of the community themselves. REFERENCES 1. . Evaluation of the contribution of demographics, access to health care, treatment, and tumor characteristics to racial differences in survival of advanced prostate cancer. Prostate Cancer Prostatic Dis.2019; 22(1):125-136. doi: 10.1038/s41391-018-0083-4 Crossref, Medline, Google Scholar 2. . Access to definitive treatment and survival for intermediate-risk and high-risk prostate cancer at hospital systems serving health disparity populations. Urol Oncol.2023; 41(5):252.e9-252.e17. doi: 10.1016/j.urolonc.2023.01.011 Crossref, Medline, Google Scholar 3. . Racial disparity in delivering definitive therapy for intermediate/high-risk localized prostate cancer: the impact of facility features and socioeconomic characteristics. Eur Urol.2018; 73(3):445-451. doi: 10.1016/j.eururo.2017.07.023 Crossref, Medline, Google Scholar 4. Clinical and Translational Science Awards Consortium; Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. Principles of Community Engagement. 2nd ed.National Institutes of Health; 2011. NIH Publication No. 11-7782. Google Scholar 5. . Racial differences in the treatment and outcomes for prostate cancer in Massachusetts. Cancer.2021; 127(15):2714-2723. doi: 10.1002/cncr.33564 Crossref, Medline, Google Scholar 6. . The Mass General Brigham Prostate Cancer Outreach Clinic: tackling disparities by providing more equitable access to care. AUANews. 2022; 27(12):40-41. Google Scholar 7. . Community-based participatory research: a capacity-building approach for policy advocacy aimed at eliminating health disparities. Am J Public Health.2010; 100(11):2094-2102. doi: 10.2105/AJPH.2009.170506 Crossref, Medline, Google Scholar 8. . Challenges of community outreach with the Mass General Brigham Prostate Cancer Outreach Clinic. AUANews. 2023; 28(9):12-13. Google Scholar 9. . Community-engaged research—essential to addressing health inequities. New Engl J Med.2023; 389(21):1928-1931. doi: 10.1056/NEJMp2307774 Crossref, Medline, Google Scholar 10. . Research participation in marginalized communities—overcoming barriers. New Engl J Med.2022; 386(3):203-205. doi: 10.1056/NEJMp2115621 Crossref, Medline, Google Scholar Funding/Support: This work is funded by the American Cancer Society, Pfizer Global Medical Grants (Prostate Cancer Disparities #63354905; Dr Trinh), and a Health Disparity Research Award from the Department of Defense Congressionally Directed Medical Research Program (#PC220551; Dr Trinh). Conflict of Interest Disclosures: Dr Trinh reported receiving consulting fees from Astellas, Bayer, Intuitive Surgical, Janssen, Novartis, and Pfizer. No other disclosures were reported. Ethics Statement: Author Contributions: Conception and design: Trinh, Labban, Daniels, Feldman. Data analysis and interpretation: Trinh. Data acquisition: Trinh. Drafting the manuscript: Trinh, Labban, Daniels. Critical revision of the manuscript for scientific and factual content: Trinh, Labban, Feldman. Statistical analysis: Trinh, Labban. Supervision: Trinh, Feldman. © 2024 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Advertisement Copyright Dr Trinh), and a Health Disparity Research Award from the Department of Defense Congressionally Directed Medical Research Program (#PC220551; Dr Trinh). Conflict of Interest Disclosures: Dr Trinh reported receiving consulting fees from Astellas, Bayer, Intuitive Surgical, Janssen, Novartis, and Pfizer. No other disclosures were reported. Ethics Statement: Author Contributions: Conception and design: Trinh, Labban, Daniels, Feldman. Data analysis and interpretation: Trinh. Data acquisition: Trinh. Drafting the manuscript: Trinh, Labban, Daniels. Critical revision of the manuscript for scientific and factual content: Trinh, Labban, Feldman. Statistical analysis: Trinh, Labban. Supervision: Trinh, Feldman. Advertisement Advertisement PDF downloadLoading ...