Citations

Abstract Background: Equitable representation in research remains a critical issue. Barriers to diversity in research have been identified across personal, provider, and health systems levels. To achieve true health equity, investigators must creatively collaborate with community stakeholders for increased education and partnership. The Mayo Clinic Community Engagement in Research and Clinical Trial (CERCT) curriculum was developed in 2022 to improve the inclusivity and diversity of frontline community-based health workers in research, including community health workers (CHWs), pharmacy technicians, health advocates, and citizen scientists. Aim: The CERCT curriculum was designed to empower and improve the skills necessary for engaging members of the communities about research and clinical trial (CT) participation. Aims for this project include beta pilot training of key community stakeholders in underserved minoritized communities, evaluating the efficacy of CERCT modules through increased recruitment into the Mayo Clinic Florida Community Research Registry; and increased diverse representation in research studies. Methods: This project will train community health advocate cohorts in educating the community on the importance and benefits of participating in research and CT and how to effectively communicate that information within their circles of influence both at work and where they live. Five community health advocate cohorts in Florida counties will be trained through 2-hour online modules, taken at their leisure. Results: Eight online module units will be utilized for beta training of CHWs, pharmacy technicians, health advocates and citizen scientists. Modules include explaining importance of biomedical research and CT; recognizing the different types of research and human participation studies; describing the importance/need of increased representation and inclusion; identifying how the safety, welfare, and well-being of participants are protected at every step in the research process; understanding the role of healthcare providers in research participation; learning communication strategies and tools to raise awareness of CT; examining at an in-depth level the informed consent process and conversation with potential participants; and learning to build trust and address common patient concerns and questions. Efficacy will be assessed via community enrollment in the Mayo Clinic Community Research Registry. Conclusion: Currently, community health workers and pharmacy technicians are an underexplored avenue for disseminating CT education and research inclusivity. The development and beta testing of a curricula specifically created for key community stakeholders who may or may not work in the healthcare or research fields seeks to empower those members with the education to inform their communities and increase representation in science. Designed for increasing education, dispelling common misperceptions, and an easy format, these modules are expected to increase the reach of research into historically underrepresented communities. Citation Format: Jennifer M. Crook, Opeyemi Bolajoko, Barbara Greguson, Gwen Boe, Karen Young, Katrina Croghan, Folakemi Odedina. Increasing the arm of research by finding and training key community stakeholders: The Mayo Clinic "Community Engagement in Research and Clinical Trial (CERCT)" curriculum phase 2 [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A086.

Abstract Background: Sub-Saharan African immigrant (SSAI) men constitute one of the fastest-growing immigrant populations in the United States and a large heterogeneous group in cancer survivorship. Yet research has ignored decision making about health and behavioral risk factors among SSAI communities. Intersecting acculturation and culture-specific perceptions about cancer screening within decision-making frameworks may be an essential step towards developing meaningful interventions for immigrant men’s healthcare. Objectives: This study aimed to gain insight into cancer-related beliefs and health decision-making practices among sub-Saharan African immigrant men. Methods: A qualitative design intersecting grounded theory analysis was employed using 16 semi-structured, in-depth individual interviews with SSAI men residing in Georgia and Florida. Participants were recruited from health fairs, community events, and by snowball effect. The average age of participants was 51 years with country of birth including Cameroon, Ethiopia, Ghana, Kenya, and Nigeria. An interview guide was prepared with emphasis on SSAI’s perspectives on lifestyle factors for cancer and decision making about cancer screening. Data were audio-recorded, transcribed, and analyzed using open, inductive, and axial coding via NVivo 12 qualitative data analysis software. Results: Findings identified key cultural factors impacting barriers to and facilitators of SSAI men’s decision-making processes and health-seeking behaviors. Most participants making positive decisions reflected on intercultural health practices made in collaboration with clinicians, significant others and community partnerships. Most participants with negative decisions tended to consider socio-cultural barriers and shortcomings in US health-care system. Participants’ preventative care decisions about cancer screening differed. Conclusions: This qualitative study illuminated key cultural factors among SSAI men that influenced their decision making about cancer screening and health-seeking behaviors. Future research should investigate longitudinal and quantitative studies to test decision-making outcomes. Funding Source: This study is funded by the National Institute on Minority Health and Health Disparities (1R15MD017012-01A1). Keywords: Cancer health disparities, Decision-making, Immigrant men, Intersectionality, Qualitative study Citation Format: Assata Kokayi, Gladys Asiedu, Kaitlin Van Voorhis, Rae Walker, M.E. Young, Folakemi Odedina, Motolani Ogunsanya, Ernie Kaninjing. Intersecting acculturation and decision making about cancer screening among sub-Saharan African immigrant men: A qualitative study [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A062.

Abstract INTRODUCTION In the past decade, Jacksonville, Florida has seen an increase in African immigrants. However, little is known about their health needs and perspectives related to community health and clinical trials. The Mayo Clinic Comprehensive Cancer Center (MCCCC) Community Outreach and Engagement (COE) Office and Programs partnered with multiple community-based organizations as part of the FL Community Engagement Alliance Against COVID-19 to hold a series of focus groups with African immigrants to better understand their perspectives surroudning these determinants. METHODS This was a qualitative study with African immigrants residing in Jacksonville, Florida. Data was collected by community partner, Jocelyn Turner Consulting, who has led multiple community-based studies in Florida. Recruitment was in partnership with African businesses and churches. Using a guide developed by MCCCC COE, three focus groups were held to explore African immigrants’ 1) general experiences, 2) access to social services, 3) perspective of community health and diseases, 4) access and use of healthcare services, 5) knowledge and participation in clinical trials, and 6) appropriate strategies for providing community education and enhancing participation in research studies. RESULTS 24 participants participated in the focus groups. 83% had recently immigrated from Africa (Democratic of the Congo, Benin, Ghana, Sudan, Mali, Nigeria, Ethiopia, and Nigeria). The remaining 17% recently immigrated from Haiti or came to the US as a baby. Participants reported suprise to the proliferation of chronic diseases, such as increased cancer diagnoses of those who immigrated to the United States. Most participants associated this with the Western sedentary lifestyle, dietary habits, and lack of access to fresh food. Participants connected to refugee organizations reported knowledge of the ability to access health education resources and mental/physical care services, but those not connected with similar organizations expressed limited knowledge about access. Similarly, participants with no connection to refugee organizations reported not knowing where to access healthcare services and not seeking services until home remedies had failed. Only 33% of participants reported knowledge of clinical trials and all reported mistrust of research. Many of the participants expressed a need for health-related information upon arrival in the United States. CONCLUSION There is currently little infrastructure in place to support African immigrants in Jacksonville, Florida, which can contribute to cancer health disparities in this population. Strong community engagement is needed to partner with African immigrant communities to address culturally specific needs identified of this underrepresented population. The needs expressed by participants include information on physical activity, nutrition, and healthcare/clinical trials. A strong partnership with African immigrant communities has the potential to address cancer disparities and increase both trust and participation in clinical trials. Citation Format: Jocelyn Turner, Laureen Husband, Jessica Otero, Opeyemi Bolajoko, Parisa Fathi, Jennifer Crook, Folakemi Odedina. Perspectives of African immigrants on community health needs and clinical trials [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A052.

Abstract Background: Health Zone 1 in Jacksonville, Fl contains a large population of underserved residents with limited resources. The high level of poverty, lower educational attainment, increased chronic illness diagnoses, and higher rates of mortality can be attributed to poorer overall health from diseases such as cancer and diabetes when compared to other health zones. Mayo Clinic Comprehensive Cancer Center Community Outreach and Engagement (MCCC COE) partnered with American Legion Post 197 (ALP 197), a veteran led organization, to specifically address the health disparities face by residents of this community. The post is located within Health Zone 1 and has a history of philanthropic contributions, making it a trusted community partner vital to the success of community health initiatives. In November 2022, ALP began instituting twice monthly Lunch & Learn (LL) programs, offering meals/snacks in conjunction with health education. Aims: The aims of LL programs are to increase resident access to: (1) health information, (2) health resources, and (3) clinical trials. Methodology: Using the community based participatory research framework and funded by the Department of Defense, MCCC COE first increased infrastructure of ALP197 by upgrading internet and public connectivity, installation of touch kiosks, mounting digital boards, and health literature (flyers and pamphlets). The LL are where healthcare experts facilitate discussion with participants on various topics, specifically requested by residents. Topics have included SDoH, understanding prescribed medication, the importance of clinical trials, mental health and stress management, stroke prevention, and proton therapy. LL are advertised on radio stations and shared through emails to past participants and other organizations. During LL programs, participants are instructed about and directed to the kiosks, where they may obtain more information on illnesses, access resources, and sign up for clinical trials. Results: To date, LL have been attended by over 50 residents. The efforts at the ALP 197 has led to increased knowledge, access to resources via the kiosks, and an increase in signup for clinical trials. The outcomes of this effort have also resulted in additional partnerships. One such partnership is with LitTV, a black owned and operated TV network that disseminates information locally in Duval County, nationally and internationally. Reach of the activities at the post includes television interviews, and articles, viewed by thousands and disseminated widely discussing our collaboration. Conclusion: The impact of our partnership with ALP 197 to reduce disease burden among in Health Zone 1 is already far reaching. LL continue to increase in monthly participation with new topic requested by residents regularly. Future monitoring of participant knowledge and attitude changes from LL are planned to be studied through pre/post surveys. We have received additional funding from the DOD to expand this initiative to health organizations and to other American Legion Posts in the Duval area. Citation Format: Vinessa Gordon, Shaina Flynn, Jennifer Crook, Arnold Merriweather, Vermelle Smith, Fullwood Marvin, Che Ngufor, Cassandra Small, Folakemi Odedina. Addressing health disparities through lunch and learns in underserved communities [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A046.

Abstract Background: The National Comprehensive Cancer Network (NCCN) recommends the use of tissue-based genetic tests, such as Decipher, Prolaris, and Confirm mdx for localized prostate cancer, to help patients and caregivers make more informed treatment decisions at the time of diagnosis. However, while much enthusiasm currently exists for the burgeoning field of genomic medicine, prostate cancer disparities continue to persist in underserved communities despite the existence of evidence-based treatment guidelines. Methods: A diverse 15-member Community Advisory Board (CAB) representing rural and urban communities in Duval County, Florida were recruited from May to June 2023, to build a community-academic partnership, for the development and implementation of a genetic literacy patient-caregiver educational intervention for localized prostate cancer. The 15-member CAB was divided into groups of 5 for focus group discussions. Qualitative and quantitative data from CAB members were integrated to gain better understanding of the facilitators and barriers for prostate cancer genetic literacy in underserved communities. Results: The thematic analysis reveals several key themes related to prostate cancer, screening, treatment, and genetics. These themes reflect the diverse perspectives and experiences of the CAB members regarding prostate cancer, ranging from personal anecdotes to broader societal issues. Participants expressed thoughts related to fear, lack of knowledge, cultural beliefs, and access to healthcare. The discussion on prostate cancer and tissue based genetic testing highlighted the complexities surrounding prostate cancer and the need for further education, awareness, and access to affordable healthcare for all individuals at risk. Conclusion: CAB members emphasized the importance of improving access to information, promoting education, and addressing cultural barriers to ensure that individuals are informed about available options for prostate cancer diagnosis and treatment. Citation Format: Ewan K. Cobran, Jocelyn Turner, Folakemi Odedina, Alan H. Bryce, Christopher Williams, Jose Rodriguez, Roger Williams, Woodrow Nathan, Thomas Bryant III, LoveVonia Nathan, Laureen Husband. Community advisory board members’ perspectives on genetic literacy and patient-caregiver communication of prognostic genomics for localized prostate cancer [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A042.

Abstract Introduction: Underrepresented communities experience a lack in research participation due to multifaceted barriers including historical research mistrust, language barriers, transportation inaccessibility, and other social determinants of health. The disproportionate representation in racial, ethnic, and medically underserved communities furthers the gap in health disparities and treatment outcomes. For this reason, the Mayo Clinic Community Research Registry (CoRR) was developed in 2022 to specifically create a registry of underrepresented communities and connect them to research studies. Methodology: Mayo Clinic CoRR utilizes a community based participatory research (CBPR) approach involving bidirectional engagement with community participants, partnership with community stakeholders and leaders, dissemination of clinical trial information, and use of evidence-based education materials for community outreach. CoRR community partnerships include fraternities, sororities, churches, the American Legion, local physicians, pharmacies, clinics, and health fair events. Through questionnaires, study participants indicate the level of research participation they are comfortable with and are matched to research studies based on their individualized responses. New Unpublished Data: As of early June 2023, CoRR has 270 participants enrolled in the registry with 94% of participants being Black and 6% Hispanic. Average age of the participants is 63 years and includes 63% female and 37 % male. As community input is vital to its development, Mayo Clinic CoRR has partnered with a community advisory board for ongoing discussion of study procedures and recruitment initiatives. This feedback has resulted in over 25 protocol modifications from bidirectional community input and engagement with the study to tailor it to community needs. Revisions include modification of inclusion and exclusion criteria to allow interested, low literacy participants to join, offering written and online platforms for participation in Somali, French, and Creole languages. CoRR adaptations have also implemented a community newsletter to visually provide updated CoRR information, highlight research studies in which CoRR participants have been included, as well as engage CoRR participants regularly. Future developments for CoRR include the establishment of an ad hoc Committee with registry participants to provide another level of safeguarding for enrolled CoRR participants. Conclusion: Responsivity to the needs of the community is vital for the continued development and success of Mayo Clinic CoRR, which has led to a successful ongoing enrollment of underrepresented communities into research studies. By utilizing targeted CBPR, the CoRR demonstrates a proof of concept in recruiting and retaining participants in hard-to-reach demographics with the goal of reducing health disparities in chronic diseases, including cancer. Citation Format: Emelina Asto-Flores, Chelsea Mir, Sandy Goncalves, Giovanna Moreno Garzon, Nuwanthi Heendeniya, Jennifer Crook, Folakemi Odedina. Increasing involvement and accrual in research studies from communities of underrepresented populations through the lens of a community based participatory approach via the Community Research Registry (CoRR) [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A038.

Abstract Despite notable progress in early detection, prevention, and treatment of prostate cancer within the United States, racial disparities are present very early in the patient journey of Black men, starting with the shared decision-making process. The disproportionately higher number of Black men diagnosed with prostate cancer also suggests that Black men must also contend with the management of associated physiological and psychosocial symptoms. The survivorship care plan was designed to communicate critical information that cancer survivors and their health care advocates need as a guidebook for long term post treatment care, and improved survivorship. An associated systematic literature review conducted by our multidisciplinary investigative team revealed there was a severe underutilization of survivorship care plans within cancer survivorship care especially with Black men. The considerable lack of utilization and/or tailoring of survivorship care plans may be a significant contributor to the worsening of health disparities in this population. Co-designing survivorship care plans with key stakeholders, specifically Black survivors and their health care advocates, is imperative to ensure that the plan meets the needs and preferences that Black men have for survivorship care. This presentation will discuss the steps the investigative team used to address the disparities in shared decision-making, and the subsequent underutilization of survivorship care plans. The investigative team utilized semi-structured interviews and focus group methodology to explore how the lived experiences of Black male prostate cancer survivors are incorporated and addressed in the construction and contents of a culturally tailored survivorship care plan (CaP_SCP- Black Men). An evaluability assessment was conducted to determine whether implementation of the newly created survivorship care plan is feasible, appropriate, and addresses the specific needs of the population before full implementation. This presentation will discuss how this combination of approaches allowed the investigative team to understand how survivorship care plans affect the unique complexities of survivorship in Black men, and allows for the feasibility study of the implementation of a culturally relevant survivorship care plan (CaP_SCP- Black Men) in a population that bears the greatest burden nationally and globally. Citation Format: Timethia Bonner, Kimlin Ashing, Folakemi Odedina. The iCCARE Consortium for Prostate Cancer in Black men: Evaluability assessment of the implementation of a care plan for black prostate cancer survivors [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A041.

Abstract Black men are disproportionately affected by prostate cancer (CaP), with limited progress in closing the CaP care and survivorship gaps experienced by Black men compared to other racial/ethnic groups. Unfortunately, there is an uptick in CaP incidence rate in the United States (US) since 2014. As reported by the American Cancer Society, the rising CaP incidence rate indicates a shift towards higher grade and stage during diagnosis. The prostate cancer (CaP) disparities experienced by Black men in the US is a microcosm of the global burden of CaP seen in men of African ancestry. For example, the top ten countries leading CaP mortality in the world are all Black nations in Africa and the Caribbean. The complexity of CaP disparities and the need for a unique approach to better understand and address a complex chronic disease, such as CaP, underscores the need for consortium research that is multilevel, collaborative, translational, and global. Through the Department of Defense funding, we formed an inclusive Cancer Care Research Equity (iCCaRE) for Black Men Consortium to advance health equity and reduce disparities in CaP. Comprising CaP survivors, advocates, scientists, and clinicians, the iCCaRE for Black Men Consortium addresses structural, social and biological determinants of CaP among ethnically diverse Black men globally, including US Black men, West African immigrant men in the US and indigenous West African men. The overall goal of the iCCaRE consortium is to optimize CaP diagnosis experiences, treatment and survivorship based on the Science of Survivorship (SOS). Our central hypothesis is that improving social-determinants of health (SDOH) factors, CaP care and survivorship (CaPCaS)-related factors and mediating biological factors will lead to an improvement in patient-reported outcomes (PROs). This presentation will highlight the structural inequities, societal injustices and biological determinants found to be associated with CaP care and survivorship among Black men. Additionally, we will present the use of Community Living Lab (CoLLab) Health System approach to address inequity in minoritized and marginalized communities. Citation Format: Folakemi Odedina, Roxana Dronca, Kimlin Ashing, Ernest Kaninjing, Solomon Rotimi, Che Ngufor, Arnold Merriweather, iCCaRE Consortium. Science of prostate cancer care and survivorship in black men: Structural, social and biological determinants [abstract]. In: Proceedings of the AACR Special Conference: Advances in Prostate Cancer Research; 2023 Mar 15-18; Denver, Colorado. Philadelphia (PA): AACR; Cancer Res 2023;83(11 Suppl):Abstract nr IA007.

Abstract Introduction: The lack of representation of minoritized and marginalized (MaM) populations in Clinical Trials (CTs) has been noted as one of the key factors that contribute to cancer health disparities. The challenges of CT diversity are multifactorial, including barriers at the personal, provider, health systems and protocol levels. Guided by a vision of developing and implementing inclusive CTs that address the priorities identified by our communities, we created a Community Research Registry (CoRR) with three primary aims: 1. Maintaining a CoRR database of participants who may be eligible for participation in future CTs; 2. Using the database, facilitate matching of MaM populations to Clinical Trials; and 3. Facilitating access of MaM populations to CTs. Methodology: The Mayo Clinic CoRR is IRB-approved and was implemented in 2022 through bidirectional engagement of communities, partnership with community leaders to foster community input, dissemination of CT information to high-risk communities, and use of evidence-based education materials for community outreach. Participants are recruited in MaM communities (including clinics, churches, health events) and through effective use of social media. Organized events for recruitment include: 1. CT education; 2. provision of culturally tailored CT educational materials and T-shirts; and 3. data collection from those who consent to be part of the registry. The inclusion criteria for the registry are adults and ability to read and write in English or Spanish. Informed consent is obtained prior to completion of the registry form and participants receive $10 incentive. The data is collected using REDCap, and includes name and contact information of participants, demographic information, chronic disease status and explicit consent to be contacted for future research studies (with option to state type of study). New Unpublished Data: Within 7 months of CoRR implementation, 184 MaM participants signed up with 92% Black (including 10% African immigrants), 7% Hispanic, 69% female, median age of 64 years, 24% rural residents, and most of the participants had high school level education. Over 30% of participants reported medical history of hypertension, high cholesterol, arthritis and/or diabetes. 8% reported cancer. Approved investigators (with appropriate community engagement training) have direct access to de-identified CoRR information though Tableau for the purpose of estimating participants for their study. Tableau has been found to be effective for investigators to explore the database for CT/research match. All requests for participants matching are approved by a CoRR Board that includes community representatives, prior to matching. CoRR CT matching is now in its pilot phase, with Mayo Clinic studies identified for matching. Conclusion: The feasibility of the CT CoRR has been established, and has led to over 20 CoRR Champion organizations, including churches, sororities, fraternities, and the American Legion Post. Citation Format: Folakemi T. Odedina, Floyd Willis, Jennifer Crook, Emelina Asto-Flores, Kim Barbel Johnson, Chad Workman, Mayo Clinic Comprehensive Cancer Center CommunityOutreach and Engagement. Increasing clinical trials diversity through Community Research Registry (CoRR): The Community Champions for clinical trials program [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 2 (Clinical Trials and Late-Breaking Research); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(8_Suppl):Abstract nr LB112.