Evaluating Community-Based Participatory Research to Improve Community-Partnered Science and Community Health

Over the last two decades, CBPR strategies have gained prominence in the NIH for their contribution to eliminating racial/ethnic health disparities1–5 and for their resonance with communities who have increasingly demanded an active role in research. CBPR and community-engaged research more broadly have become viable research strategies that address challenges of translational science and have become a social movement to make research meaningful to community partners. By translational science, we mean bidirectional translational processes that include community and academic negotiation and feedback loops, as well as translating research findings into practical steps communities can take, such as policy, practice, or program changes, to improve their own health. Communities of color especially have demanded that research include community voice and culturally centered methodologies.6–10 The Institute of Medicine’s recognition that evidence is necessary but insufficient to improve health provides a key to addressing both the challenges of translational science and of community expectations; it takes research findings as well as advocacy, constituency building, and community ownership to support translation into policies, practices, and interventions that can make a difference to improve health.11 The NCAI, a well-trusted and longstanding advocacy institution in “Indian Country,” with its PRC, has taken a leadership role in promoting research led and prioritized by American Indian and Alaska Native (AI/AN) communities. “Indian Country” is a term used by many American Indians to refer both to the geographic spaces where they live and to a collective identity for individuals who identify with the idea of “Indian Country.” In its “sociopolitical sense,” the term “Indian Country is the Indian equivalent of terms like ‘African American community,’ ‘Hispanic community,’ ‘Jewish community,’ etc., and is frequently used to refer to the national American Indian population.”12 We use the term in this sense. However, the term “Indian Country” also has a legal definition,12 which describes geographic areas under the jurisdiction of tribal and federal law but not state law.13 The NCAI PRC’s approach to tribally driven research aligns with the philosophy of past NCAI Executive Director Vine Deloria (1995), who wrote Red Earth, White Lies: Native Americans and the Myth of Scientific Fact, articulating the importance of decolonizing and Indigenizing research.14 Embracing the power of community to define identity and create space for envisioning change, “Indigenizing research” positions communities as foundational partners and places significant weight on communities’ benefit from research.15 Although community voice in research is increasingly valued, a challenge of CBPR science remains: To better specify how community–academic partnerships create added value for research and how partnering practices best contribute to improved health outcomes. Recognizing the diversity of CBPR and community-engaged research, the question becomes: Under what conditions and with which characteristics can partnerships produce effective and sustainable CBPR and community-engaged research, leading to changes in practices, policies, and improved health equity? A partnership between the NCAI PRC, the Indigenous Wellness Research Institute at the University of Washington, and the Center for Participatory Research at the University of New Mexico is asking these very questions in a current NIH study, “Research for Improved Health: A Study of Community–Academic Partnerships.” Launched under the Native American Research Centers for Health (NARCH) V mechanism (available from http://www.ihs.gov/Research/index.cfm?module=narch), this 4-year, national, mixed-methods study of diverse CBPR partnerships seeks to assess facilitators and barriers of effective CBPR and the relationships between partnering practices and CBPR/health outcomes. It is based on the premise that a better understanding of the science of CBPR can revolutionize the field, resulting in quicker uptake of proven practices, more effective community/academic partnerships, better understanding of research implementation contexts, strategic funding of promising studies, and improvements in population-level health. With both universities within the National Center for Research Resources’ Clinical and Translation Science Awards consortium, the dissemination of study results will be facilitated, providing an opportunity to influence community-engaged research practices in health science centers nationwide. The NCAI—serving as the lead institution—is the oldest (since 1944), largest, and most representative Indian organization, serving as the unified voice of AI/AN tribal governments. A membership organization, located in Washington, DC, the NCAI functions as the “United Nations” for Indian Country, advocating around issues that affect tribal governments and Native peoples—from education and health to economic development and natural resources management. In 2004, the NCAI established its PRC, as a think tank of seven staff members, to “support Indian Country in shaping its own future” and to equip tribal leaders with data and policy-oriented products to forecast and support policy development. Consistent with NARCH policy, the NCAI PRC receives 30% of the budget and oversees project operations, convenes the Scientific and Community Advisory Council (SCAC), and participates in the research to promote tribal research capacity building. The SCAC, composed of academic and community members with experience in CBPR, provides general consultation on the project. The UNM oversees the qualitative and UW oversees the quantitative design. Together, the partners will collaborate on data analyses and translate findings into practice and policy, with a particular focus on dissemination in AI/AN communities. The purpose of this essay is twofold: (1) To describe the study origins, aims, design, methods, and early accomplishments and (2) to discuss the early lessons learned from our NCAI/UNM/UW partnership, particularly how a strong community partner can employ CBPR to transform science so communities gain research capacities and benefits. Our objective here is to assist community-engaged/CBPR researchers and practitioners with their efforts to evaluate partnership effectiveness toward advancing translational science.