Are We the Problem? A Call to Action for Addressing Institutional Challenges to Engaging Community Partners in Research.

Community-engaged research (CEnR) is a potent tool for addressing health inequities and fostering equitable relationships among communities, researchers, and institutions. CEnR involves collaboration throughout the research process, demonstrating improvements in study recruitment and retention, intervention efficacy, program sustainability, capacity building among partners, and enhanced cultural relevance. Despite the increasing demand for CEnR, institutional policies, particularly human participation protection training (HPP), lag behind, creating institutional barriers to community partnerships. Here, we highlight challenges encountered in our ongoing study, Fostering Opportunities in Research through Messaging and Education (FOR ME), focused on promoting shared decision-making around clinical trial participation among Black women diagnosed with breast cancer. Grounded in CEnR methods, FOR ME has a partnership with a community-based organization (CBO) that addresses the needs of Black women with breast cancer. Our CBO partner attempted to obtain HPP training, which was administratively burdensome and time-consuming. As CEnR becomes more prevalent, academic and research institutions, along with researchers, are faced with a call to action to become more responsive to community partner needs. Accordingly, we present a guide to HPP training for community partners, addressing institutional barriers to community partner participation in research. This guide outlines multiple HPP training pathways for community partners, aiming to minimize institutional barriers and enhance their engagement in research with academic partners.

Expanding Outcomes in Cancer Screening Safety Net Programs: Promoting Sustainability and Policy Reform.

Community-engaged patient navigation safety net programs are established as an evidence-based approach to address cancer prevention and early detection efforts, but barriers to expand and sustain such programs persist. In addition, few studies describe how these programs impact buy-in among communities and policy change within health care systems and government. We describe how we used the Capacity for Sustainability Framework to guide efforts for program sustainability and community, institutional, and policy level change in a breast cancer screening and patient navigation safety net program. The nine domains of the Capacity for Sustainability Framework were used to develop program logic models, to inform program implementation and quality improvement agendas, and to guide multi-level partner and stakeholder engagement, outreach, and dissemination of outcomes. The program is currently in its seventh year and continues to be annually funded by a city public health department. In 2021, additional 5-year renewable funding from a state public health department was secured. In addition, institutional program support was expanded for patients diagnosed with breast cancer. Program leaders worked with policymakers to draft legislation to support training certification and third-payor reimbursement for patient navigators and community health workers. The program is well-known and trusted among community members, community-based organizations, and providers. Community, organizational, and policy-level outcomes demonstrate that community-engaged patient navigation safety net programs can influence more than individual and interpersonal outcomes and can be sustained over time.

Mi-CARE: Comparing Three Evidence-Based Interventions to Promote Colorectal Cancer Screening among Ethnic Minorities within Three Different Clinical Contexts.

Multiple evidence-based interventions (EBIs) have been developed to improve the completion of colorectal cancer (CRC) screening within Federally Qualified Health Centers (FQHCs) and other safety net settings in marginalized communities. Little effort has been made, however, to evaluate their relative effectiveness across different clinical contexts and populations. To this end, we tested the relative effectiveness of three EBIs (mailed birthday cards, lay navigation, and provider-delivered education) among a convenience sample of 1252 patients (aged 50-75 years old, who were due for CRC screening and scheduled for a visit at one of three clinics within a network of Federally Qualified Health Centers (FQHCs) in the United States. To be eligible for the study, patients had to identify as African American (AA) or Latino American (LA). We compared the effects of the three EBIs on CRC screening completion using logistic regression. Overall, 20% of the study population, an increase from a baseline of 13%, completed CRC screening. Clinical demographics appeared to influence the effectiveness of the EBIs. Mailed birthday reminders appeared to be the most effective within the multi-ethnic clinic (p = 0.03), provider-delivered education within the predominantly LA clinic (p = 0.02), and lay navigation within the predominantly AA clinic (p = 0.03). These findings highlight the importance of understanding clinical context when selecting which evidence-based interventions to deploy.

Creating and Implementing a Community Engagement Strategy for the 2022-2027 Illinois Comprehensive Cancer Control Plan Through an Academic-State Public Health Department Partnership.

INTRODUCTION: Comprehensive cancer control (CCC) plans are state-level blueprints that identify regional cancer priorities and health equity strategies. Coalitions are encouraged to engage with community members, advocacy groups, people representing multiple sectors, and working partners throughout the development process. We describe the community and legislative engagement strategy developed and implemented during 2020-2022 for the 2022-2027 Illinois CCC plan. METHODS: The engagement strategies were grounded in theory and evidence-based tools and resources. It was developed and implemented by coalition members representing the state health department and an academic partner, with feedback from the larger coalition. The strategy included a statewide town hall, 8 focus groups, and raising awareness of the plan among state policy makers. RESULTS: A total of 112 people participated in the town hall and focus groups, including 40 (36%) cancer survivors, 31 (28%) cancer caregivers, and 18 (16%) Latino and 26 (23%) African American residents. Fourteen of 53 (26%) focus group participants identified as rural. Participants identified drivers of cancer disparities (eg, lack of a comprehensive health insurance system, discrimination, transportation access) and funding and policy priorities. Illinois House Resolution 0675, the Illinois Cancer Control Plan, was passed in March 2022. CONCLUSION: The expertise and voices of community members affected by cancer can be documented and reflected in CCC plans. CCC plans can be brought to the attention of policy makers. Other coalitions working on state plans may consider replicating our strategy. Ultimately, CCC plans should reflect health equity principles and prioritize eliminating cancer disparities.

Healthcare Predictors of Information Dissemination About Genetic Risks.

OBJECTIVES: Despite the benefits of genetic counseling and testing (GCT), utilization is particularly low among African American (AA) women who exhibit breast cancer features that are common in BRCA-associated cancer. Underutilization is especially problematic for AA women who are more likely to die from breast cancer than women from any other race or ethnicity. Due to medical mistrust, fear, and stigma that can be associated with genetic services among racial/ethnic minorities, reliance on trusted social networks may be an impactful strategy to increase dissemination of knowledge about hereditary cancer risk. Informed by the social cognitive theory, the purpose of this study is to determine: 1) which AA patients diagnosed with breast cancer and with identified hereditary risk are sharing information about hereditary risk with their networks; 2) the nature of the information dissemination; and 3) if personal GCT experiences is associated with dissemination of information about hereditary risk. METHODS: Among consented participants (n = 100) that completed an interview administered using a 202-item questionnaire consisting of open- and closed-ended questions, 62 patients were identified to be at higher risk for breast cancer. Descriptive statistics, bivariable chi-square, Pearson's exact tests, and regression analyses were conducted to examine differences in characteristics between high-risk participants who disseminated hereditary risk information and participants who did not. RESULTS: Among high-risk participants, 25 (40%) indicated they had disseminated information about hereditary risk to at least one member in their family/friend network and 37 (60%) had not. Receipt of both provider recommendations and receipt of GCT services was associated with greater odds of disseminating information about hereditary risk with networks, OR = 4.53, 95%CI [1.33, 15.50], p = .02. CONCLUSION: Interventions that increase self-efficacy gained through additional personalized knowledge and experience gained through provider recommendations and by undergoing GCT may facilitate information dissemination among social/familial networks.

Pilot study of a culturally sensitive intervention to promote genetic counseling for breast cancer risk.

BACKGROUND: Despite the benefits of genetic counseling and testing, uptake of cancer genetic services is generally low and Black/African American (Black) women are substantially less likely to receive genetic services than non-Hispanic White women. Our team developed a culturally sensitive, narrative decision aid video to promote uptake of genetic counseling among Black women at risk for a hereditary breast cancer syndrome that can be incorporated in conjunction with population-based cancer risk assessment in a clinical setting. We report here a pilot study to demonstrate changes in intention to access genetic counseling and intervention satisfaction. METHODS: Black women who were personally unaffected by breast cancer and were recommended for genetic counseling based on family history screening in a mammography center were recruited at the time of the mammogram. A prospective, pre-post survey study design, guided by theoretical constructs, was used to evaluate baseline and immediate post-intervention psychosocial factors, including intention to participate in genetic counseling and intervention satisfaction. RESULTS: Pilot recruitment goals were met (n = 30). Pre-intervention, 50% of participants indicated that they were extremely likely to make a genetic counseling appointment, compared with 70% post-intervention (p = 0.05). After watching the intervention, 50% of participants indicated that the video changed their mind regarding genetic counseling. CONCLUSIONS: This study demonstrated cultural satisfaction with a decision aid intervention designed to motivate Black women with hereditary breast cancer risk to attend a genetic counseling appointment. Our study showed that intention may be a specific and key construct to target in interventions designed to support decision-making about genetic services. Study results informed the design of a subsequent large scale, randomized implementation study. TRIAL REGISTRATION: Trial registration: Clinicaltrials.gov NCT04082117 . Registered September 9, 2019. Retrospectively registered.

Intentional Storytelling to Sustain Low-cost/Free Breast Cancer Services: A Latina Example of Community-driven Advocacy.

BACKGROUND: Community-based public health advocacy efforts are crucial to sustaining the low-cost/free breast cancer services that support underserved populations. OBJECTIVES: We introduce two ways in which narrative theory may be a useful tool for developing advocacy materials and provide an example, using a community-academic partnership to promote Latina breast health in Chicago, Illinois. METHODS: Community and academic partners 1) engaged 25 Spanish-speaking Latinas in an advocacy workshop, 2) leveraged narrative theory to develop multi-media advocacy materials, and 3) disseminated materials to policymakers. LESSONS LEARNED: Our project highlights 1) that narrative theory may be useful to describe how Latinas engage policy-makers in relation to their needs and cultural norms, 2) the importance of flexibility and offering community members multiple options to engage policymakers, and 3) the importance of leveraging partners' complementary strengths. CONCLUSIONS: Narrative theory may be a useful tool for developing advocacy materials in community-academic partnerships.

Development of a culturally sensitive narrative intervention to promote genetic counseling among African American women at risk for hereditary breast cancer.

BACKGROUND: African American women with hereditary breast cancer risk are less likely to undergo genetic counseling and testing compared with non-Hispanic White women. Inequities in the use of precision cancer care are likely to exacerbate racial disparities in cancer outcomes. A culturally sensitive multimedia narrative intervention was developed to motivate African American women at risk for hereditary breast cancer to engage in genetic counseling. METHODS: Development of the intervention was grounded in the Integrative Model of Behavioral Prediction using a phenomenological, deductive approach and employed multiple qualitative methods for data collection, including 1-on-1 interviews and story circles with members of the target audience to identify salient themes and lived experiences. Focus group testing was then conducted with members of the group of focus, primary care providers, and community stakeholders. RESULTS: Six themes that mapped to the theoretical model were identified. Lived experiences were abstracted from story circle data to create a narrative storyline. Educational content and motivational messaging derived from the 6 themes were embedded into the script. Focus group testing with stakeholder groups was used to refine the intervention. Testing of the final multimedia narrative with focus groups indicated that the intervention was culturally sensitive and authentic, and the messaging was effective. CONCLUSIONS: Multiple qualitative data collection methods and a robust theoretical framework of health behavior were key elements for this study to develop a culturally sensitive, narrative intervention that reflects lived experiences and motivates underserved African American women with hereditary breast cancer risk to engage in genetic counseling. This strategy can be applied to mitigate racial inequities in the use of other genomic approaches for personalizing cancer care.

Recommendations from a Dialogue on Evolving National Cancer Institute-Designated Comprehensive Cancer Center Community Outreach and Engagement Requirements: A Path Forward.

While cancer mortality is declining in the United States, significant racial, ethnic, economic and geographic inequities persist. To help address inequities in cancer treatment, care, support and research, the National Cancer Institute (NCI) instituted the community outreach and engagement (COE) mandate for NCI-designated comprehensive cancer centers (CCCs). The Bristol Myers Squibb Foundation designed a convening and listening session on COE with NCI leaders and staff gathering representatives from CCCs and the broader cancer community. This paper captures recommendations from the listening session for the NCI and CCCs to further evolve the implementation and impact of the COE mandate on cancer control and outcomes.

Special Convening and Listening Session on Health Equity and Community Outreach and Engagement at National Cancer Institute-Designated Comprehensive Cancer Centers.

In recent years, the cancer research and care community has been more attuned to health equity, increasingly pursuing coordinated and comprehensive action to achieve equitable health outcomes. In addition to its support of a joint research agenda for health disparities in 2017, the National Cancer Institute (NCI) has demonstrated its commitment to addressing health inequities with its 2012 requirement for cancer centers to define and address the needs of a local "catchment area" and the 2016 mandate for Community Outreach and Engagement (COE). With several years of experience with the COE requirements, there is an opportunity to reflect on the experience to-date and identify opportunities to bolster the impact of COE on equitable cancer outcomes for the future. To do so, the Bristol Myers Squibb Foundation (BMSF) hosted a special convening and listening session in April 2019. The session agenda was cocreated by BMSF and NCI leaders and staff. It brought together 41 individuals, including representatives from the NCI Cancer Centers Program, Division of Cancer Control and Population Health and Center to Reduce Cancer Health Disparities, 22 NCI-designated, emerging or affiliated comprehensive cancer centers, and the broader cancer community. This article captures key themes from that meeting, including an overview of current COE efforts, with a deeper look at how four cancer centers are embedding health equity and COE efforts into their institutions and work, and the successes and challenges they have encountered.

Assessing the relationship between patient-provider communication quality and quality of life among rural cancer survivors.

PURPOSE: We explored relationships between patient-provider communication quality (PPCQ) and three quality of life (QOL) domains among self-identified rural cancer survivors: social well-being, functional well-being, and physical well-being. We hypothesized that high PPCQ would be associated with greater social and functional well-being, but be less associated with physical well-being, due to different theoretical mechanisms. METHODS: All data were derived from the 2017-2018 Illinois Rural Cancer Assessment (IRCA). To measure PPCQ and QOL domains, we respectively used a dichotomous measure from the Medical Expenditure Panel Survey's Experience Cancer care tool (high, low/medium) and continuous measures from the Functional Assessment of Cancer Therapy-General (FACT-G). RESULTS: Our sample of 139 participants was largely female, non-Hispanic White, married, and economically advantaged. After adjusting for demographic and clinical variables, patients who reported high PPCQ exhibited greater social well-being (Std. ß = 0.20, 95% CI: 0.03, 0.35, p = 0.02) and functional well-being (Std. ß = 0.20, 95% CI: 0.05, 0.35, p = 0.03) than patients with low/medium PPCQ. No association was observed between PPCQ and physical well-being (Std. ß = 0.06, 95% CI: - 2.51, 0.21, p = 0.41). Sensitivity analyses found similar, albeit attenuated, patterns. CONCLUSION: Our findings aligned with our hypotheses. Future researchers should explore potential mechanisms underlying these differential associations. Specifically, PPCQ may be associated with social and functional well-being through interpersonal mechanisms, but may not be as associated with physical well-being due to multiple contextual factor rural survivors disproportionately face (e.g., limited healthcare access, economic hardship) and stronger associations with clinical factors.

The SHARED Project: A Novel Approach to Engaging African American Men to Address Lung Cancer Disparities.

Black men are disproportionately impacted by lung cancer morbidity and mortality. Low-dose helical computed tomography (LDCT) lung cancer screening has demonstrated benefits for reducing lung cancer deaths by identifying cancers at earlier, more treatable stages. Despite the known benefits, LDCT screening is underutilized in black men. Studies in racially heterogeneous populations have found correlations between screening behaviors and factors such as physician trust, physician referral, and a desire to reduce the uncertainty of not knowing if they had lung cancer; yet little is known about the factors that specifically contribute to screening behaviors in black men. Community engagement strategies are beneficial for understanding barriers to health-care engagement. One community engagement approach is the citizen scientist model. Citizen scientists are lay people who are trained in research methods; they have proven valuable in increasing communities' knowledge of the importance of healthy behaviors such as screening, awareness of research, building trust in research, and improving study design and ethics. This paper proposes an intervention, grounded in community-based participatory research approaches and social network theory, to engage black men as citizen scientists in an effort to increase lung cancer screening in black men. This mixed-methods intervention will examine the attitudes, behaviors, and beliefs of black men related to uptake of evidence-based lung cancer screening.

Implementation of an integrated framework for a breast cancer screening and navigation program for women from underresourced communities.

BACKGROUND: Trends in breast cancer mortality in the United States are decreasing, but racial disparities persist. Using an implementation science framework to inform evidence-based breast cancer screening and navigation within federally qualified health centers (FQHCs) with community stakeholders can mitigate barriers to screening. METHODS: Using an integrated theoretical framework of the Practical, Robust Implementation and Sustainability Model and the Social Ecological Model, the University of Illinois Cancer Center and Mile Square Health Centers (MSHC) FQHC developed a breast cancer screening and navigation program, known as the Mile Square Accessible Mammogram Outreach and Engagement (Mi-MAMO) program, to tackle breast cancer disparities in Chicago among underresourced communities. To increase access to screening, patient navigators conducted community outreach activities. Partnerships were forged with community-based organizations, health care systems, and insurers. Outcomes were monitored with standardized performance measures. RESULTS: Between January and December 2017, 103 women received a screening mammogram at MSHC. To increase screening rates, Mi-MAMO was started in August 2017. Between January and December 2018, the number of women who received a screening mammogram increased to 567. From August 2017 to December 2018, 779 women received navigation to screening and/or diagnostic services through the Mi-MAMO program. The majority of women were uninsured (63.9%), and 95.5% were racial/ethnic minorities. Twenty-four percent (n = 185) completed diagnostic services, and 10 women received positive breast cancer diagnoses (mean age, 49.7 years); all successfully navigated to treatment. The Mi-MAMO program is ongoing. CONCLUSIONS: Deploying an integrated framework for patient navigation programs can increase breast cancer screening utilization and awareness among underresourced populations at higher risk for breast cancer.

A mixed methods study: Midlife African American women's knowledge, beliefs, and barriers to well-woman visit, flu vaccine, and mammogram use.

African American women (AAW) are particularly at risk for deleterious health outcomes that might be mitigated through increased preventive care use. A mixed methods study that examined relationships between knowledge of, beliefs about, and barriers to well-woman visits, flu vaccines, and mammograms was conducted with midlife AAW who participated in an online survey (n = 124) and in-depth interviews (n = 19). Findings showed that greater knowledge of preventive service recommendations and positive patient-provider relationships were associated with greater preventive service use. Flu vaccines were significantly underused. Study implications inform strategies to increase preventive care utilization among AAW and increase capacities to improve health disparities.

Understanding Complex Roles of Family for Latina Health: Evaluating Family Obligation Stress.

We developed a measure of family obligation stress and compared its relationship to health and unmet health care needs relative to social support among a sample of US-based Latinas. Data come from a randomized controlled trial within 4 clinics to increase mammography among Latinas (n = 539). The 1-factor measure had acceptable reliability and construct validity. Family obligation stress was associated with worse health and greater unmet health care needs. Family obligation stress varied by years in the United States and country of origin. Our measure of family obligation stress contributes new venues to family research among Latino populations.

Engaging African American Men as Citizen Scientists to Validate a Prostate Cancer Biomarker: Work-in-Progress.

BACKGROUND: African American men (AAM) are under-represented in prostate cancer (PCa) research despite known disparities. Screening with prostate-specific antigen (PSA) has low specificity for high-grade PCa leading to PCa over diagnosis. The Prostate Health Index (PHI) has higher specificity for lethal PCa but needs validation in AAM. Engaging AAM as citizen scientists (CSs) may improve participation of AAM in PCa research.Results and Lessons Learned: Eight CSs completed all training modules and 139 AAM were recruited. Challenges included equity in research leadership among multiple principal investigators (PIs) and coordinating CSs trainings. CONCLUSIONS: Engaging AAM CSs can support engaging/recruiting AAM in PCa biomarker validation research. Equity among multiple stakeholders can be challenging, but proves beneficial in engaging AAM in research. OBJECTIVES: Assess feasibility of mobilizing CSs to recruit AAM as controls for PHI PCa validation biomarker study. METHODS: We highlight social networks/assets of stakeholders, CSs curriculum development/implementation, and recruitment of healthy controls for PHI validation.

Genetic Counseling and Testing in a Community Setting: Quality, Access, and Efficiency.

There is an increasing need for genetic counseling and testing for individuals diagnosed with cancer, as treatment may be affected by the results. In addition, the identification of individuals before a diagnosis of cancer allows for optimal surveillance and early detection and prevention of cancer. With the recognition that as much as 10% of all cancers are hereditary, there is a growing need to improve access to genetic counseling and genetic testing, both before and at the time of diagnosis. This article focuses on models of identifying at-risk patients, including underserved communities; providing genetic counseling and testing in community practices; using telehealth; and collaborating with nongenetics health care providers and technological solutions to maximize efficiency and access.

Lung Cancer Screening and Epigenetics in African Americans: The Role of the Socioecological Framework.

Lung cancer is the leading cause of cancer morbidity and mortality in the U.S. and racial/ethnic minorities carry the greatest burden of lung cancer disparities with African Americans (AAs) impacted disproportionately. Inequities in lung cancer health disparities are often associated with multiple bio-behavioral and socio-cultural factors among racial/ethnic minorities. Epigenetic research has advanced the understanding of the intersectionality between biological and socio-cultural factors in lung cancer disparities among AAs. However, gaps exist in the engagement of diverse populations in epigenetic lung cancer research, which poses a challenge in ensuring the generalizability and implementation of epigenetic research in populations that carry an unequal cancer burden. Grounding epigenetic lung cancer research within a socio-ecological framework may prove promising in implementing a multi-level approach to community engagement, screening, navigation, and research participation among AAs. The University of Illinois Cancer Center (UI Cancer Center) is employing an evidence-based (EB) model of community/patient engagement utilizing the socio-ecological model (SEM) to develop a culturally sensitive epigenetic lung cancer research program that addresses multiple factors that impact lung cancer outcomes in AAs. By implementing epigenetic research within a group of Federally Qualified Health Centers (FQHCs) guided by the SEM, the UI Cancer Center is proposing a new pathway in mitigating lung cancer disparities in underserved communities. At the individual level, the framework examines tobacco use among patients at FQHCs (the organizational level) and also tailors epigenetic research to explore innovative biomarkers in high risk populations. Interpersonal interventions use Patient Navigators to support navigation to EB tobacco cessation resources and lung cancer screening. Community level support within the SEM is developed by ongoing partnerships with local and national partners such as the American Lung Association (ALA) and the American Cancer Society (ACS). Lastly, at the policy level, the UI Cancer Center acknowledges the role of policy implications in lung cancer screening and advocates for policies and screening recommendations that examine the current guidelines from the United States Preventive Services Task Force (USPTF).

Illinois Breast and Cervical Cancer Program: Implementing Effective Public-Private Partnerships to Assure Population Health.

With the implementation of the Affordable Care Act (ACA), it is essential for the public health sector to elucidate its role with respect to its mission of assuring population health, and to clarify its role with respect to the private health care system. To that end, we examined the value added to the population health enterprise of successful public-private partnerships (PPPs) such as those found in the Illinois Breast and Cervical Cancer Program (IBCCP), the Centers for Disease Control and Prevention's (CDC's) National Breast and Cervical Cancer Early Detection Program (NBCCEDP) in Illinois. Key Informant (KI) interviews focused on IBCCP implementation were conducted with IBCCP lead agency (LA) program coordinators (n = 35/36) in winter 2012-2013. Analysis was conducted using Atlas.ti software. The KI interviews revealed the existence of highly developed PPPs between the IBCCP LAs and individual medical providers and hospitals across Illinois. The data suggest that the small amount of funding provided by IBCCP to each LA in Illinois has been used to build and sustain robust PPPs in the majority of the IBCCP communities. The PPPs developed through the IBCCP can be seen as an unplanned benefit of CDC's investment in breast and cervical health through the NBCCEDP. While the IBCCP/NBCCEDP might be considered a "boutique" categorical program which some may consider no longer necessary as individuals gain insurance under the ACA, the KI data underscore the critical role of public sector dollars, not only to serve individuals and communities directly but also to mobilize the private health care sector to act in partnership with public entities and become advocates for underserved communities.