Jennifer Schaal

Stakeholder Perspectives on Creating and Maintaining Trust in Community–Academic Research Partnerships

Community–academic research partnerships aim to build stakeholder trust in order to improve the reach and translation of health research, but there is limited empirical research regarding effective ways to build trust. This multisite study was launched to identify similarities and differences among stakeholders’ perspectives of antecedents to trust in research partnerships. In 2013-2014, we conducted a mixed-methods concept mapping study with participants from three major stakeholder groups who identified and rated the importance of different antecedents of trust on a 5-point Likert-type scale. Study participants were community members (n = 66), health care providers (n = 38), and academic researchers (n = 44). All stakeholder groups rated “authentic communication” and “reciprocal relationships” the highest in importance. Community members rated “communication/methodology to resolve problems” (M = 4.23, SD = 0.58) significantly higher than academic researchers (M = 3.87, SD = 0.67) and health care providers (M = 3.89, SD = 0.62; p < .01) and had different perspectives regarding the importance of issues related to “sustainability.” The importance of communication and relationships across stakeholders indicates the importance of colearning processes that involve the exchange of knowledge and skills. The differences uncovered suggest specific areas where attention and skill building may be needed to improve trust within partnerships. More research on how partnerships can improve communication specific to problem solving and sustainability is merited.

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

BackgroundHealth 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.MethodsWe 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.ResultsQualitative 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.ConclusionLatino 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.

Critical incident technique: an innovative participatory approach to examine and document racial disparities in breast cancer healthcare services

Disproportionate and persistent inequities in quality of healthcare have been observed among persons of color in the United States. To understand and ultimately eliminate such inequities, several public health institutions have issued calls for innovative methods and approaches that examine determinants from the social, organizational and public policy contexts to inform the design of systems change interventions. The authors, including academic and community research partners in a community-based participatory research (CBPR) study, reflected together on the use and value of the critical incident technique (CIT) for exploring racial disparities in healthcare for women with breast cancer. Academic and community partners used initial large group discussion involving a large partnership of 35 academic and community researchers guided by principles of CBPR, followed by the efforts of a smaller interdisciplinary manuscript team of academic and community researchers to reflect, document summarize and translate this participatory research process, lessons learned and value added from using the CIT with principles of CBPR and Undoing Racism. The finding of this article is a discussion of the process, strengths and challenges of utilizing CIT with CBPR. The participation of community members at all levels of the research process including development, collection of the data and analysis of the data was enhanced by the CIT process. As the field of CBPR continues to mature, innovative processes which combine the expertise of community and academic partners can enhance the success of such partnerships. This report contributes to existing literature by illustrating a unique and participatory research application of CIT with principles of CBPR and Undoing Racism. Findings highlight the collaborative process used to identify and implement this novel method and the adaptability of this technique in the interdisciplinary exploration of system-level changes to understand and address disparities in breast cancer and cancer care.

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.

Establishing New Community-Based Participatory Research Partnerships using the Community-Based Participatory Research Charrette Model: Lessons from the Cancer Health Accountability for Managing Pain and Symptoms Study

Abstract:Background: Community-based participatory research (CBPR) is a collaborative and equitable approach to research inquiry; however, the process of establishing and maintaining CBPR partnerships can be challenging. There is an ongoing need for innovative strategies that foster partnership development and long-term sustainability. In 2010, the University of North Carolina at Chapel Hill developed a CBPR charrette model to facilitate stakeholder engagement in translational research.Objective: To describe how the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) Study leveraged the CBPR charrette process to develop and strengthen its CBPR partnership and successfully implement research objectives.Methods: Fourteen CHAMPS community, academic, and medical partners participated in the CBPR charrette. Two co-facilitators guided the charrette application process and in-person discussion of partnership strengths, needs, and challenges. Community experts (CEs) and academic experts (AEs) with extensive experience in CBPR and health disparities provided technical assistance and recommendations during the in-person charrette.Conclusions: Overall, the CHAMPS partnership benefited significantly from the charrette process. Specifically, the charrette process engendered greater transparency, accountability, and trust among CHAMPS partners by encouraging collective negotiation of project goals and implementation, roles and responsibilities, and compensation and communication structures. The process also allowed for the exploration of newly identified challenges and potential solutions with support from CEs and AEs. Furthermore, the charrette also functioned as a catalyst for capacity building among CHAMPS community, academic, and medical partners. Future studies should compare the impact of the CBPR charrette, relative to other approaches, on partnership development and process evaluation outcomes.

Reducing Cancer Disparities Through Community Engagement: The Promise of Informatics

Significant health disparities continue to persist across the cancer control continuum (prevention, detection, diagnosis, treatment, and survivorship) despite decreases in cancer mortality and morbidity rates. Public health informatics (PHI) approaches offer the potential to address and reduce cancer health disparities by addressing the underlying social determinants of health. Community engagement, through community-based participatory research (CBPR) in identification, development, evaluation, and implementation offers key advantages to enhanced sustainability, acceptability, and delivery of PHI. The CBPR approach allows community members and stakeholders to provide input from a culturally relevant perspective at each level of the development and/or use of PHIs. This chapter discusses the application of the CBPR approach to improve the use and adoption of informatics tools and platforms through two case study examples that are addressing two major social determinants of health disparities: institutional racism and information inequalities. Three common themes emerged from the two case studies that facilitated successful PHI project implementation: transparency, making data relevant, and capacity building. To ensure project success, the case studies also addressed challenges that may arise in PHIs such as digital health literacy, Internet and broadband accessibility, and PHI platform sustainability.Abstract Significant health disparities continue to persist across the cancer control continuum (prevention, detection, diagnosis, treatment, and survivorship) despite decreases in cancer mortality and morbidity rates. Public health informatics (PHI) approaches offer the potential to address and reduce cancer health disparities by addressing the underlying social determinants of health. Community engagement, through community-based participatory research (CBPR) in identification, development, evaluation, and implementation offers key advantages to enhanced sustainability, acceptability, and delivery of PHI. The CBPR approach allows community members and stakeholders to provide input from a culturally relevant perspective at each level of the development and/or use of PHIs. This chapter discusses the application of the CBPR approach to improve the use and adoption of informatics tools and platforms through two case study examples that are addressing two major social determinants of health disparities: institutional racism and information inequalities. Three common themes emerged from the two case studies that facilitated successful PHI project implementation: transparency, making data relevant, and capacity building. To ensure project success, the case studies also addressed challenges that may arise in PHIs such as digital health literacy, Internet and broadband accessibility, and PHI platform sustainability.