Community-Guided Focus Group Analysis to Examine Cancer Disparities.

BACKGROUND: Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers. OBJECTIVES: This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a "power analysis" of the cancer care system and 2) the development of the intervention's training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff. METHODS: Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe "pressure point encounters" or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. CONCLUSIONS: A collaborative qualitative data analysis process strengthened the capacity of our community-medical-academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Experiences of Latinos with limited English proficiency with patient registration systems and their interactions with clinic front office staff: an exploratory study to inform community-based translational research in North Carolina.

BACKGROUND: Health services research of Latinos with limited English proficiency (LEP) have largely focused on studying disparities related to patient-provider communication. Less is known about their non-provider interactions such as those with patient registration systems and clinic front office staff; these interactions precede the encounter with providers and may shape how comfortable patients feel about their overall health services experience. This study explored Latino patients with LEP experiences with, and expectations for, interactions with patient registration systems and front office staff. METHODS: We conducted 20 in-depth interviews with Latinos with LEP (≥ 18 years of age) who seek health services in the Piedmont Triad region, North Carolina. We analyzed participants' quotes and identified themes by using a constant comparison method. This research was conducted by a community-academic partnership; partners were engaged in study design, instrument development, recruitment, data analysis, and manuscript writing. RESULTS: Qualitative analysis allowed us to identify the following recurring themes: 1) inconsistent registration of multiple surnames may contribute to patient misidentification errors and delays in receiving health care; 2) lack of Spanish language services in front office medical settings negatively affect care coordination and satisfaction with health care; and 3) perceived discrimination generates patients' mistrust in front office staff and discomfort with services. CONCLUSION: Latino patients in North Carolina experience health services barriers unique to their LEP background. Participants identified ways in which the lack of cultural and linguistic competence of front office staff negatively affect their experiences seeking health services. Healthcare organizations need to support their staff to encourage patient-centered principles.

Beyond incentives for involvement to compensation for consultants: increasing equity in CBPR approaches.

BACKGROUND: Community-based participatory research (CBPR) strives for equitable collaboration among community and academic partners throughout the research process. To build the capacity of academia to function as effective research partners with communities, the North Carolina Translational and Clinical Sciences Institute (NC TraCS), home of the University of North Carolina at Chapel Hill (UNC-CH)'s Clinical and Translational Sciences Award (CTSA), developed a community engagement consulting model. This new model harnesses the expertise of community partners with CBPR experience and compensates them equitably to provide technical assistance to community-academic research partnerships. OBJECTIVES: This paper describes approaches to valuing community expertise, the importance of equitable compensation for community partners, the impact on the community partners, opportunities for institutional change, and the constraints faced in model implementation. METHODS: Community Experts (CEs) are independent contractor consultants. CEs were interviewed to evaluate their satisfaction with their engagement and compensation for their work. LESSONS LEARNED: (1) CEs have knowledge, power, and credibility to push for systems change. (2) Changes were needed within the university to facilitate successful consultation to community-academic partnerships. (3) Sustaining the CE role requires staff support, continued compensation, increased opportunities for engagement, and careful consideration of position demands. (4) The role provides benefits beyond financial compensation. (5) Opportunities to gather deepened relationships within the partnership and built collective knowledge that strengthened the project. CONCLUSIONS: Leveraging CE expertise and compensating them for their role benefits both university and community. Creating a place for community expertise within academia is an important step toward equitably including the community in research.