Objectives Black/African American (B/AA) pancreatic ductal adenocarcinoma (PDAC) patients have worse clinical outcomes than White patients and are underrepresented in genomic databases. We aimed to expand our understanding of the PDAC somatic landscape from a diverse cohort. Materials and Methods Formalin-fixed paraffin-embedded specimens from 24 surgically resected PDAC cases were collected, with self-reported race/ethnicity. Whole exome sequencing was performed on malignant and benign tissue. Bioinformatics analysis included deduction of genetic ancestry and somatic mutational analysis, with comparisons to public datasets. Results Out of 24 cases, 17 identified as B/AA race; genetic ancestry analysis confirmed proportions of Sub-Saharan African ancestry greater than 47%. The most commonly mutated genes included KRAS , TP53 , SMAD4 , and CDKN2A . Comparison of mutations in our cohort versus publicly available, predominantly White datasets showed higher mutation frequencies of ATM, RREB1, BRCA1/2, KDM6A, ARID1A, BRAF, and MYC ( P < 0.04). When cohorts were combined and analyzed by race, no mutation frequencies differences were observed, including KRAS . Conclusions Genomic analysis of PDAC tumors from B/AA and White patients demonstrate similarities in mutation frequencies. Larger studies are needed to further understand molecular characterizations across continental subpopulations. This study provides further rationale for equitable representation of diverse patients in genomic databases and clinical trials.
Conducting Clinical Research in Low Research Resource Countries: Lessons Learned From the International Registry of Men With Advanced Prostate Cancer Study in Nigeria
PURPOSE There is limited cancer clinical research in sub-Saharan African countries despite the significant burden of cancers. The primary objective of this strengths, weaknesses, opportunities, and threats (SWOT) analysis was to understand and document factors affecting the successful implementation of prostate cancer (CaP) clinical research in Nigeria. METHODS The research team used a qualitative design involving International Registry of Men with Advanced Prostate Cancer (IRONMAN) study team members as participants from four regional sites in Nigeria. One-hour listening sessions were conducted via Zoom at each site, focusing on SWOT related to the IRONMAN study. All sessions were recorded, transcribed, and analyzed. Themes were inductively coded and then synthesized across all four sites. RESULTS The study teams identified several strengths and weaknesses in conducting the IRONMAN study at their respective sites. Key strengths included access to robust patient population for recruitment and the availability of essential resources, such as lab space, clinical knowledge, and adequate staffing. Weaknesses centered on the social determinants of health that hinder patient participation, such as transportation challenges, distance to clinics, limited access to care, and insufficient biorepository space for sample storage. A prominent opportunity identified was the potential for Nigerian institutions to engage in more clinical research, particularly multisite global trials. Threats included difficulties in retaining research staff and political instability. CONCLUSION This study highlights the promising research opportunities in Nigeria. The lessons learned from the IRONMAN study provide valuable insights into the feasibility of conducting CaP clinical research and trials tailored to the needs of Black men in sub-Saharan Africa. These findings offer a roadmap for future research efforts, with the potential to expand clinical trials and improve health outcomes across the region.
Decentralized Clinical Trials at Home: Commentary on Caregivers’ Burden
Decentralized clinical trials (DCTs) provide the opportunity to bring interventional studies closer to participants in their homes or a suitable location closer to prospective participants, thus increasing participants’ diversity, accrual, retention, health care, and research access. However, little is known about the burden of caring for cancer patients participating in DCTs. This article describes how DCTs might affect the caregivers of cancer patients. The points discussed include how technological challenges for those without adequate digital literacy can overburden participants and their caregivers at home, as well as managing and optimizing research logistics and safe handling of samples. In addition, the shift in labor from the study personnel to the participants and their caregivers in a bid to complete several study procedures on their own can increase the care burden, especially if not well incentivized. Therefore, it is important to accumulate evidence on ways to optimize DCTs, especially in the home environment, without increasing the burden on caregivers, who will be an integral part of the study team and support the research at home.
Bridging the Gap: A Community Advisory Board Promoting Community Engagement in Cancer Research for Ethnically Diverse Populations
Prostate cancer disproportionately affects Black men in the United States, leading to higher mortality rates and health disparities. In addition, based on historical mistreatment and discrimination and the resulting distrust of the medical system, Black populations are consistently underrepresented in health care-related research. Addressing these challenges requires community-driven approaches integrating diverse perspectives and fostering equitable health outcomes. This article describes the formation and impact of The Multidisciplinary Health Outcomes Research and Economics (MORE) Lab Community Advisory Board (CAB) at The University of Oklahoma Health Sciences. We purposefully recruited Black men with CaP and Black health care professionals to serve on a CAB and advise on ongoing research to address quality of life (QoL) issues in ethnically diverse Black CaP survivors. The CAB seeks to mitigate CaP disparities and improve health equity by empowering Black voices and promoting collaborative research practices. The MORE Lab CAB has successfully provided a venue for community members to contribute to designing a culturally relevant research program to improve the QoL in ethnically diverse Black men with CaP. The CAB has been instrumental in developing research goals and tools, implementing a series of town hall meetings to educate and support Black CaP survivors, and disseminating research findings. In conclusion, CABs are potentially critical in guiding research, enhancing community engagement, and advocating for culturally responsive health interventions.
Abstract B035: Mayo Clinic Cancer Comprehensive Center Community Outreach and Engagement Internal Medicine Residents Rotations
Abstract Introduction: The Community Engagement Internal Medicine Residents Rotation (IMRR) connects Mayo Clinic Florida (MCF) medical professionals to partners in the Florida catchment area to better understand administrative operations, the referral processes of these organizations and how best they fit the needs of the communities they serve. The goal is to give residents exposure to a more diverse population including rural, Black and Hispanic/Latin as well as connecting them with partners where community- based research is conducted. This IMRR is also designed to encourage cancer-focused community based research (CBR). We learned that the lack of patient diversity at MCF was a drawback to resident recruitment and developing an interest in cancer focused health disparities research. We agreed to assist in this potential solution to the diversity deficit. Methods: The goal for the elective is to provide senior residents with an introduction to community engagement and cancer focused community engaged research. The elective consists of one week of didactics and one of experiential learning. The first week includes an introduction to cancer health disparities in our catchment areas and how to conduct cancer focused CBR. During the second week, residents interact with community partners focused on providing care and cancer education to those who otherwise may not have access to resources. Strategically, these partners are those with whom we are engaged in cancer research initiatives. Internal Medicine Residents (IMR) complete visitation paperwork that included Background Screenings and Sovereign Immunity Contracts. We limit the number of IMR to two in order to accommodate some of the smaller community clinic spaces. IMR visit community partners for no less than a half day each and at the end of the rotation they debrief and complete rotation evaluations. Data: Rotation evaluations aggregated to date indicate 91.67% of IMR feel the rotation meets the goals and objectives. In addition, evaluation comments indicate an improved understanding of population health as well as community resources for improved health and wellness in underserved populations. Anecdotal comments also show evidence of increased understanding of cancer focused CBR and cancer related health disparities. Conclusion: IMMR through community outreach and engagement visits have increased understanding of how partners address varying cancer burden needs. The IMRR has increased residents’ awareness of how environment impacts access to healthcare and improved cost-conscious ordering and treatment plans (medications). IMR better understand the significance of how social determinants of health (SDOH) resources impact community. IMR are better equipped to help patients and their families navigate to additional SDOH solutions and are familiar with the referral process for community safety net resources. The offer of this type of IMRR has enhanced recruitment to MCF training programs and significantly increased IM and fellow participation in cancer focused CBR initiatives and studies. Citation Format: Monica Albertie, Chelsea Reeves, Noreen Stephenson, Folakemi Odedina. Mayo Clinic Cancer Comprehensive Center Community Outreach and Engagement Internal Medicine Residents Rotations [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B035.
Abstract B088: Decentralizing cancer disparities research: Barbershops as a foundation for community outreach and engagement
Abstract Introduction Addressing cancer disparities by meeting people where they are is a crucial aspect of community-engaged research. The impact of this has been seen through the community outreach and engagement efforts of cancer centers across the country, with many focusing on churches, community events, and other trusted places. In the past four years, Mayo Clinic’s Cancer Health Equity Program (CHERP) has made a specific effort to decentralize clinical trials and community-engaged research by going to the places our community trusts and frequents. As a result, we partnered with a trusted leader in Jacksonville, Florida to engage with barbershops as sites for health information dissemination. We re-engaged a cohort of barbers who had previously worked with our outreach initiatives as part of the Community Engagement Alliance (CEAL) Against COVID-19 Disparities and recruited new ones for this phase of work. Methods Our community partner completed a training hosted by Florida A&M University on working with barbershops for community outreach and engagement research. The community partner then trained each barber on sharing health information, incorporating feedback from the previous cohort. Barbers were also trained to collect engagement and pre/post-test information to measure outcomes. Health information included COVID-19 prevention/ vaccine information and general cancer prevention information used in other community outreach and engagement initiatives. Results A total of 19 barbers engaged in this initiative; 9 were a part of our previous work with barbers and 10 were recruited for the new year of funding. The barbers all identified as Black and engaged with a total of 497 clients. Of the 497 clients, 91% identified as Black, and less than 5% identified as White, Asian, or Native American. 344 clients identified as male (69%), 147 as female (30%), 1 as transgender (0.2%), and 5 did not disclose their gender. The majority of participants were born between the 1960s and 2000s, with most reporting having a high school degree or GED (55%). Post-test information found evidence of knowledge change, including a 3.4% increase in those who responded understanding how COVID-19 is spread and a 4% increase in those who reported vaccines to be safe. Barbers also expressed their appreciation for being included in this initiative. Conclusion CHERP, in partnership with the community, is addressing disparities at different levels. One of the barriers the barbers had to overcome was hesitancy in sharing health-related topics. However, sustained initiatives, such as this one might overcome this barrier. This study’s engagement with barbershops to reach communities most impacted by cancer disparities points to the impact of barbershops as a site for cancer disparities research. Citation Format: Jessica Otero Machuca, Opeyemi Bolajoko, Jocelyn Turner, Folakemi Odedina. Decentralizing cancer disparities research: Barbershops as a foundation for community outreach and engagement [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B088.
Abstract B002: Cancer health equity and research advocacy program among immigrant communities
Abstract Introduction: In an effort to ensure an all-inclusive initiative that would close the disparity gap among the immigrant communities in Florida, we developed a pilot project under the Inclusive Cancer Care Research Equity (iCCaRE) for Black Men Consortium with generous support from the Mayo Clinic Comprehensive Cancer Center (MCCCC). The objective is to train cancer advocates to engage their communities and develop and implement cancer prevention and screening navigation programs. The central hypothesis for this program is that community-driven cancer advocacy will significantly improve cancer awareness, knowledge, prevention, risk reduction, screening uptake, and early detection among Black immigrants. Methods: We collaborated with immigrant communities’ leaders to brainstorm on the current state of healthcare access and disparities experienced by Black immigrants and to set program and research priorities through listening sessions. Cancer advocates were trained to engage their communities to (1) develop and implement cancer risk reduction and education programs using train-the-trainer approach, (2) mobilize the resources within the community for cancer health promotion, prevention, and screening strategies, (3) partner with key stakeholders to accomplish targeted objectives; (4) raise funds to support advocacy activities; and (5) develop and successfully organize community-centered programs. Results: We are currently working with 10 Black immigrant organizations, including immigrant churches across different ethnicities, including Nigeria, Ghana, Cameroon, Liberia, South Africa, Haiti, Jamaica, and across different cities in the United States. Eighteen community cancer advocates, including breast and prostate cancer survivors, caregivers, and community influencers, were trained to engage the immigrant communities in cancer risk reduction and research in Florida using multiple channels, including in-person community programs and online engagement approaches. We have engaged 720 immigrants in cancer risk reduction education and the need to participate in research during advocate-led in-person community outreaches. We currently have 26 immigrants who have volunteered in the Mayo Clinic Community Research Registry. The program is ongoing, and we anticipate that more than 750 will be engaged, and 100 will volunteer to be registered in the Mayo Clinic Community Research Registry. Conclusion: Advocate-led advocacy in immigrant communities will provide evidence for compelling arguments about the feasibility and availability of the Black immigrant population for robust and sustainable research and program engagements to eliminate disparity and advance cancer health equity. Citation Format: Opeyemi O. Bolajoko, Caleb Ramirez, Shannon Pressey, Noreen A. Stephenson, Vinessa A. Gordon, Binta Onyibe, Kingsley Efe, Austin Okaiwele, Mubo Oloruntobo, Brittany M. Norris, Folakemi T. Odedina. Cancer health equity and research advocacy program among immigrant communities [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B002.
Abstract B028: Beyond the diagnosis: A town hall event to explore black men’s journey with prostate cancer and sexuality
Abstract Introduction Prostate cancer (CaP) significantly impacts Black men, who face higher morbidity despite lower overall mortality. The disease and its treatments profoundly affect sexuality, relationships, and quality of life (QoL), necessitating robust support systems. Healthcare, spousal support, community involvement, and interactions with other survivors are crucial for enhancing survivors' self-esteem and daily functioning. Virtual town halls offer a platform to share trusted information and foster community support, overcoming geographic and structural barriers. This town hall event will explore Black CaP survivors' experiences, focusing on sexuality post-diagnosis and related medical and psychological needs. MethodsOn June 13, 2024, The University of Oklahoma and Stephenson Cancer Center will host the 5th town hall event (via Microsoft Teams) to address Black CaP survivors' sexual health concerns. Previous town halls averaged 70 attendees and covered various aspects of the CaP journey. This event will include storytelling and panel discussions, with presentations from two CaP survivors and their spouses on personal experiences and coping strategies. A urologic oncologist will discuss treatment advancements and early detection, while a clinical health psychologist will address psychological and emotional aspects of survivorship. Simultaneous watch parties will be held in Milledgeville, Georgia, and Dallas, Texas. Interactive Q&A sessions will allow participant engagement. Attendees will complete a post-event survey to assess the session's impact and collect clinical and sociodemographic data. Quantitative data will be analyzed using SPSS v28, and audio-recorded sessions will be transcribed and thematically analyzed using Nvivo. Results will be available by the end of June and presented at the conference. Expected Results Participants will gain a deeper understanding of the intersection between CaP and sexuality in Black men's health. Discussions will highlight the psychological impact of a cancer diagnosis, challenges in maintaining sexual health during and after treatment, and the role of mental health support. The town hall aims to emphasize the importance of a strong support system, providing valuable coping skills through shared experiences and expert insights. Topics will include the emotional and psychological impact of sexual health challenges, partner support, and the necessity of open communication with healthcare providers. The event seeks to improve CaP survivors' QoL by emphasizing continuous education and integrating sexual health into overall survivorship care. Conclusion This town hall event aims to bridge gaps in understanding and addressing Black CaP survivors' sexual health concerns. By fostering open dialogue and providing expert insights, we hope to improve these men's QoL and survivorship care, emphasizing mental health support, spousal support, and continuous education. Citation Format: Motolani Ogunsanya, Ernie Kaninjing, Parisa Ghasemi, Skyler Danker, Daniel Morton, Kathleen Dwyer, Mary Ellen Young, Folakemi T. Odedina, Yaw Nyame, Amy Siston, Jordan Neil, Adam C Alexander, Perry Cole, Patrick Beckford, Donald Reese, Thomas Mitchell, Everett Montgomery, Roland Odeleye, Darla E. Kendzor. Beyond the diagnosis: A town hall event to explore black men’s journey with prostate cancer and sexuality [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr B028.
Addressing Breast Cancer Equity Through Virtual Community Oncology Navigation and Engagement (vCONET)
Background Breast cancer remains a leading cause of cancer morbidity and mortality worldwide. In the United States, Black women face significant disparities in screening mammograms, experience higher rates of breast cancer at advanced stages, and are more likely to die from the disease. Aims This study aimed to develop and beta-test a virtual health navigation program to enhance breast cancer care within the Black community. We identified barriers to utilizing virtual patient navigators and factors impacting the adoption of virtual navigation for breast cancer information among Black women. Methods The vCONET (Virtual Community Oncology Navigation and Engagement) intervention was delivered through the Second Life virtual platform. The informational content was collaboratively developed with community members. Participants engaged in an informational session on risk factors, mammography information, and preventive behaviors. Surveys (n = 18) and focus groups (n = 9) assessed knowledge and insights into perceptions. Results Findings revealed a positive impact of the intervention, with participants expressing increased knowledge and willingness to seek further information about breast cancer prevention, and highlighted the engaging nature of the virtual environment, while acknowledging potential technological challenges. Conclusion Virtual health navigation shows promise in addressing breast cancer disparities by promoting awareness among Black women. Future efforts should optimize virtual navigation approaches through collaborative engagement for lasting impact, enhancing breast cancer care and equity in communities of color.
The state of cancer-focused community outreach and engagement (COE): reflections of Black COE directors
Abstract The requirement of community outreach and engagement (COE) as a major component of the National Cancer Institute (NCI) Cancer Center Support Grant has had an enormous impact on the way NCI-designated cancer centers identify, investigate, and address the needs of their catchment area (CA) communities. Given the wide-ranging diversity of our nation, COE’s scope of work (SOW) is extremely demanding and complex. Yet, COE is often marginalized and viewed as void of scientific methods when, in fact, it requires specialized scientific knowledge and a broad range of proficiencies. Black COE scientific directors may be particularly attuned to this marginalization as they have often confronted workplace inequities that resemble the health inequities observed within their cancer center’s CA. Thus, Black COE leaders are uniquely positioned to offer insight on the past, present, and future of COE. Key areas discussed include the low involvement of minoritized group members and those with appropriate expertise in national COE leadership; the lack of established, consistent criteria for evaluation of COE components and qualifications of evaluators; the need for substantial financial investment in COE; potential misalignment of community priorities and cancer center objectives; professional development and growth of COE staff and leaders; the expanding scope of COE across their respective cancer centers and CAs; and the need for center-wide involvement in COE and an “all-hands-on-deck” approach. These areas warrant thoughtful dialogue as COE evolves, for the benefit and success of all COE leaders. However, this dialogue must include diverse voices representing similarly diverse stakeholders at every level.