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 issue9,11,13,14 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 become comfortable with CNP approaches that emphasized outreach, education, and pilot studies to reduce disparities. CNPCs also were charged with identifying, training, and mentoring CBPR researchers. Felder and colleagues26 describe the cohort of CBPR researchers and mentors associated with the CNPCs. Perhaps not unexpectedly, almost 80% of mentors were non-Hispanic White, and almost one-half were male.26 However, less than 40% of early-stage/mid-career investigators and student trainees were non-Hispanic Whites, and 80% were female. Thus, the CNPCs are responsive to the federal call for increasing diversity of the scientific workforce.27 This group of younger scientists is the future generation of researchers we need to equip to use CBPR approaches to confront and eventually triumph over the cancer-related health disparities seen in the United States. Yet, only 37% of trainees felt they were thriving in the academic environment. Although more research needs to be done to elucidate reasons for this finding among CNPC trainees, other studies suggests that academia needs to more fully recognize and reward researchers engaged in CBPR. Two articles in this special issue focus on evaluating the effectiveness of CBPR for conducting cancer disparities research.28,29 A qualitative analysis of the CNP final reports provides evidence of the potential of CBPR in knowledge and intervention development, improving research methods and, of even more importance to researchers, the buy-in of communities resulting in increased participation and retention.29 Controlled studies of interventions often use delayed control groups so that no one is denied the opportunity to participate. Methods developed by Arroyo-Johnson and associates28 focuses on individual projects within these programs.28 Their experience suggests some of the challenges of operationalizing specific concepts. For example, sharing of “power, influence, and resources” can be viewed from the interpersonal level or from the locus of budgetary control. Our work is conducted against the backdrop of two concerns expressed by the National Institutes of Health in general, and the National Cancer Institute in particular. First, there is well-placed apprehension regarding the general inability or reluctance to translate existing knowledge to places of real public health relevance and clinical need. This generalized angst about translation is warranted and is especially acute in high-risk populations such as those represented in the CNPCs.30,31 Second, there has been a general failure to reduce disparities in cancer-related behaviors.32 Cancer incidence and mortality rates33,34 have been refractory to efforts that have been used successfully in European-American populations around the country (i.e., disparities in some of our populations have actually gotten worse relative to Whites over the past several decades33,34). Clearly, both of these concerns are well-substantiated by the data and, indeed, they are related. Biomedical research has often favored working with groups that are more accessible and familiar to researchers, and these populations are predominantly White and affluent. Working solely with these groups may lead to erroneous conclusions because of exposure differences between these easier-to-get-at populations and their high-risk counterparts.35 These problems also are reflected in available statistics, such as lagging accrual of minorities into clinical trials.25 Because research is often designed with this intrinsic bias that results in high rates of type III error, internal validity is severely compromised. Clearly, we cannot expect to have good external validity (on which translation depends) without “getting it right” in the first place. All competent research, including CBPR, is designed and conducted to answer important questions about disease causation, establish the magnitude of the effect of one or more risk factors on health-related outcomes, or test an intervention, or some combination of these. As the articles that comprise this special issue of Progress in Community Health Partnerships show, the activities of the CNPCs reflect and demand a commitment to work in partnership with communities and to collaborate in a spirit that honors meaningful engagement and capacity building for impacting health disparities.