Community-Based Participatory Research Adds Value to the National Cancer Institute’s Research Portfolio

Community-based participatory research (CBPR) is the core research approach used by all 23 Community Network Program Centers (CNPCs), funded from 2010 to 2015 and charged by the National Cancer Institute to reduce cancer health disparities in racial/ethnic minority and medically underserved communities across the United States. Sixteen of these CNPCs were funded under a similar initiative, called the Community Networks Program (CNP), from 2005 to 2010. All of the centers provided data, and 22 collaborated on the writing of the nine papers presented in this special issue.

Communities engaged through the CNP and CNPC initiatives often experience limited access to cancer knowledge, screening, and treatment owing to a myriad of factors, including geographic isolation, low socioeconomic status, lack of insurance, immigration status, limited English language skills, low literacy, and discrimination.^1-8 For example, the Miami CNPC works in Haitian and Cuban immigrant communities where less than 45% of women have health insurance,⁹ and upwards of 30% of residents of the communities engaged with the Deep South CNPC live in poverty.¹⁰ These conditions contribute to stress, which further jeopardizes health through direct and indirect pathways, as illustrated in examples from CNPCs in South Carolina, Washington State, and Hawai‘i.¹¹ CBPR-based approaches foster trustworthiness between high-risk communities and academic partners, especially when the population has experienced a history of discrimination and negative interactions with health care providers and researchers.^12-14 Most important, CBPR approaches bring to light community strengths and insights that can help to accelerate improvements in health.

CBPR, which emerged from social justice and action research traditions,^15-19 entails extensive sustained processes of community engagement. As such it is more likely than other research approaches to benefit communities directly, largely because CBPR seeks engagement to identify relevant research questions, design feasible studies, and interpret and disseminate data, while building leadership capacity and research resources in the community.

It is acknowledged widely that CBPR provides an ethical and moral alternative to the “top-down” research approach typically seen in biomedicine. However, as noted by Hebert et al in this issue,²⁰ it also has the potential to reduce the risk of type III errors.^15,19 These include drawing incorrect inferences from a faulty conception of how things work or selecting and/or implementing a study design that produces an answer (even if correct) to the wrong question.²¹ In other words, CBPR strategies offer great promise for addressing cancer-related health disparities in communities because they increase the 1) relevance of research questions, 2) fit of interventions for the community of interest, and 3) recruitment and retention of diverse participants, leading to materially superior scientific outcomes.^15,18,22-24

CBPR approaches can lead to formulating high-value research questions by engaging the community in defining and explaining the research problem or health concern. In short, research questions begin to take on new meaning and new excitement because unique and varied perspectives inform the ways that studies take shape. As the reports presented in this special issue indicate, community involvement across the research continuum facilitates greater specificity of research questions asked, and improved strategies to collect, analyze, and disseminate study data. Papers by Arevalo, Seay, Shirazi, and Hebert and their colleagues in this issue^9,11,13,14 describe the benefit of community collaboration for identifying risk conditions associated with health disparities, as well as improving saliency of intervention design and delivery. Moreover, when community members take part in the research process and participate in studies on topics that they find interesting and important, recruitment and retention rates are higher than the norm for racial/ethnic minority involvement in research.²⁵ Still, the long-term sustainability of CBPR initiatives is not without difficulties. Partridge and co-authors¹⁰ provide an example of challenges encountered in Deep South CNPC communities when the CNPC demanded greater emphasis on controlled intervention trials, a position that departed from the expectation of the communities, which had...