Black women's awareness of breast cancer disparity and perceptions of the causes of disparity.

Black women face the greatest breast cancer mortality burden of any racial or ethnic group in the United States. Breast cancer disparity is particularly pronounced in Chicago, where Black women were 62 percent more likely to die of breast cancer than their White counterparts in 2007. No work to date has examined views of disparity among a population living in the context of a large, well-documented, and grave health disparity. We examined (1) awareness of breast cancer disparities among Black women in Chicago; and (2) Black women's perceptions of the causes of breast cancer disparity. Four focus groups with Black women were held in Chicago. Participants completed a brief survey about their views of breast cancer prior to the group discussion. In response to the survey question, "In your opinion, who is more likely to die from breast cancer?" 51 % of participants believed all women have the same chance of dying from breast cancer. In focus group discussions, participants placed responsibility for disparity on individual behaviors and community culture. Participants believed that disparity resulted from Black women's lack of awareness of cancer screening and their failure to be screened or treated for breast cancer. The majority of participants were unaware of breast cancer mortality disparities. Moreover, while health researchers and professionals believe disparity in Chicago results from healthcare system inequalities, Black women largely viewed breast cancer disparity as a consequence of individual behaviors, knowledge and attitudes.

Community Outreach and Engagement at U.S. Cancer Centers: Notes from the Third Cancer Center Community Impact Forum.

Community outreach and engagement (COE) is a fundamental activity of cancer centers as they aim to reduce cancer disparities in their geographic catchment areas. As part of COE, NCI-Designated Cancer Centers must monitor the burden of cancer in their catchment area, implement and evaluate evidence-based strategies, stimulate catchment area relevant research, support clinical trial enrollment, and participate in policy and advocacy initiatives, in addition to other responsibilities. The Cancer Center Community Impact Forum (CCCIF) is a national annual meeting of COE professionals who work at or with cancer centers across the country. CCCIF grew out of earlier discussions at American Society of Preventive Oncology (ASPO) annual meetings, where COE was often discussed, but not exclusively. The third annual CCCIF meeting-hosted by the Sidney Kimmel Cancer Center at Thomas Jefferson University-was held in June 2022 in Philadelphia, PA, where more than 200 participants listened to dynamic presentations across 12 COE-related panel sessions. CCCIF leadership and ASPO AD/PL Workshop Planners worked together on the agenda. The 12 sessions used a COE lens to focus on: Diversity, Equity, and Inclusion; Policy; State Cancer Coalitions; Evaluation and Metrics; Implementation Science; In-reach; Outreach; Training and Education; Funding, Personnel and Resources; Clinical Trials; Innovative Methods; and Lessons from the COVID-19 pandemic. This article is a summary of main points and key lessons from each session, as well as a summary of overarching themes that were evident across the sessions.

Using Critical Race Theory to Understand Trial Participation Among Black Individuals With Systemic Lupus Erythematosus: A Qualitative Study of Patients and Caregivers.

OBJECTIVE: Black patients with systemic lupus erythematous (SLE) experience greater disease incidence and severity than White patients, and yet they are underrepresented in SLE clinical trials. We applied Critical Race Theory to qualitatively explore the influence of racism on the underrepresentation of Black patients in SLE clinical trials and to develop a framework for future intervention. METHODS: We conducted focus group sessions in Chicago and Boston with Black adults (ages ≥18 years) with SLE and their caregivers. We queried the participants about their knowledge regarding clinical trials, factors that might motivate or hinder trial participation, and how race and experiences of racism might impact clinical trial participation. Focus group responses were transcribed verbatim and analyzed thematically. RESULTS: We held 4 focus groups (n = 31 participants); 20 participants had SLE, and 11 were caregivers. All participants were Black, 90% were women, and the mean age was 54 years. Qualitative analyses revealed several themes that negatively impact trial participation, including mistrust related to racism, concerns about assignment to placebo groups, strict study exclusion criteria, and SLE-related concerns. Factors that motivated trial participation included recommendations from physicians and reputable institutions, a desire to help the greater good, and culturally sensitive marketing of trials. CONCLUSION: Actions to improve clinical trial participation among Black individuals should focus on reframing how trial information is presented and disseminated and on reevaluating barriers that may restrict trial participation. Additionally, researchers must acknowledge and respond to the presence of racial bias in health care. Community-academic partnerships may help build trust and reduce fears of mistreatment among Black individuals with SLE.

Are We Missing the Mark? The Implementation of Community Based Participatory Education in Cancer Disparities Curriculum Development.

OBJECTIVE: The Chicago south side, even more so than national populations, continues to be burdened with widening gaps of disparities in cancer outcomes. Therefore, Chicago community members were engaged in addressing the following content areas for a cancer disparities curriculum: (1) the south side Chicago community interest in participating in curriculum design, (2) how community members should be involved in designing cancer disparities curriculum, and (3) what community members believe the curriculum should address to positively impact their community. METHODS: Eighty-six community members from 19 different zip code areas of Chicago attended the deliberative session. A survey composed of three quantitative and three short-answer content questions was analyzed. RESULTS: The majority of participants were from the south side of Chicago (62 %) and females (86 %). Most, 94 %, believed community members should be involved in cancer disparities curriculum development. Moreover, 56 % wanted to be involved in designing the curriculum, and 61 % reported an interest in taking a course in cancer disparities. Three categorical themes were derived from the qualitative questions: (1) community empowerment through disparities education-"a prescription for change," (2) student skill development in community engagement and advocacy training, and (3) community expression of shared experiences in cancer health disparities. CONCLUSION: The community provided valuable input for curricular content and has an interest in collaborating on cancer disparities curriculum design. Community participation must be galvanized to improve disparities curricular development and delivery to successfully address the challenges of eliminating disparities in health.

Community grand rounds: re-engineering community and academic partnerships in health education-a partnership and programmatic evaluation.

BACKGROUND: Community participation in population health improvement can assist university researchers in targeting intervention resources more effectively and efficiently, leading to more effective implementation of interventions, because of joint ownership of both process and product. Two academic health centers partnered with community based organizations to develop a bidirectional educational seminar series called "Community Grand Rounds" (CGR), which identified health concerns of Chicago's South Side residents and provided information regarding university and community resources that addressed community health concerns. OBJECTIVES: We evaluated the community consultants' perceptions of the quality and effectiveness of the planning and implementation of the seminars that resulted from the partnership. METHODS: We conducted one-on-one interviews and focus groups with community consultants to assess their perceptions of the partnership using a tailored version of a previously developed individual and focus group interview instrument. Analysis of the interview text was conducted using grounded theory where themes were coded as they emerged. CONCLUSIONS: CGR is an effective mechanism for providing needed community health information in an easily accessible format. Additional work is needed to determine whether this format represents a sustainable community-university partnership.

"I know what CBPR is, now what do i do?": Community perspectives on CBPR capacity building.

BACKGROUND: Community-based participatory research (CBPR) offers a promising approach for combating health disparities. CBPR capacity must be developed among academics and communities. Most published CBPR capacity development work focuses on general guidance or individual partnership development. OBJECTIVES: Herein we have reported community perspectives on community capacity-building efforts involving multiple community partners, including capacity-building outcomes and identification of facilitators and challenges. METHODS: We have presented a case study using qualitative and quantitative data from community-based organization (CBO) members of a committee guiding a university-based CBPR initiative. A survey measuring 11 CBPR capacity domains was fielded at two points. Three rounds of interviews were conducted. RESULTS: Community CBPR capacity increased over time, although there remains room for improvement. Leader commitment, CBPR resources, and hands-on CBPR experiences were identified as key facilitators. Resource limitations, difficulty integrating CBPR into organizational operations, lack of specific information, and institutional inequities were identified as challenges. Recommendations offered include continued and expanded support for sharing/co-learning with academic partners and capacity-building activities and services. CONCLUSIONS: Results will inform future efforts and contribute to the understanding of capacity-building outcomes for initiatives supporting multiple CBPR partnerships.