Community-Based Participatory Research Contributions to Intervention Research: The Intersection of Science and Practice to Improve Health Equity

CHALLENGES WITHIN TRANSLATIONAL INTERVENTION RESEARCH

The widening socioeconomic and racial/ethnic health disparities documented in the past 20 years,^4,5 the chasm in the quality of health care delivery, and the extended time it takes for research findings to translate into practice⁶ have created a national urgency to design effective interventions, including an increased emphasis by the National Institutes of Health (NIH) on public health significance and impact. This context for the translational intervention sciences has produced an important new area of investigation that is now emerging as its own discipline—implementation science^7–9—with a new Implementation Science journal, conferences, and calls by the NIH for proposals. According to the NIH, “Implementation [research] is the use of strategies to adopt and integrate evidence-based health interventions and change practice patterns within specific settings.”¹⁰ To its credit, this includes a core assumption that efficacy and effectiveness trials require adaptations to local settings and consideration within complex systems.¹¹ Nonetheless, this NIH definition presents a unidirectional approach, which can privilege academic knowledge and methods, and it does not consider those barriers and conflicts that, when uncovered and addressed through CBPR approaches, can lead to greater translational success. For translational research, there are at least 6 core challenges. Table 1 lists each of these challenges and tells how CBPR addresses it.

The first challenge involves external validity, or translating specific findings from highly controlled trials to real-world community interventions in diverse contexts,^12,13 which may have high variability in culture, resources, organizational factors, and research acceptance.^8,14,15

The second challenge is the question of what is evidence, or of listening to and incorporating indigenous practices, beliefs, and theories that inform community interventions and motivate collective action for change.^16,17 Indigenous knowledge is local, unique to cultures, and focused on problem solving; it is the basis for community decision making in health, education, resource allocation, etc.¹⁸ The recognition and systematic evaluation of culturally supported interventions confront the tradition of one-way translation of knowledge—from academia to the community—and assert the value of hybrid knowledge, or the intersection between Western and indigenous medical and public health knowledge.¹⁹

The third challenge is language, which includes incompatible discourse between the academy and the community, and the power of naming, which encompasses such commonly used terms as “institutionalization” or “collaborators.” These terms can unwittingly trigger resistance and historical memories of assimilationist policies or betrayal.^20–23

The fourth challenge is one of business as usual, where academics control the research process, often by adapting and “manualizing” evidence-based behavioral prescriptions to impose on the “other,” or by using community participation with the single intent of increasing minority enrollment in clinical trials.

The fifth challenge is sustainability, because insufficient attention to implementation within organizational culture and resources is a barrier to the integration of interventions within existing practice and program settings.⁸

Finally, the challenge of lack of trust between researchers and underrepresented communities, identified strongly within CBPR initiatives, has historical resonance from the Tuskegee study and has diminished participation by people of color in research.^24,25 Such mistrust is also ongoing, as indicated by a recent lawsuit for violation of consent forms,^26,27 and has provoked actions such as the Affiliated Tribes of Northwest Indian's Education Committee resolution rebuking mandated evidence-based interventions as a mechanism of forced assimilation.²⁸ Further, a lack of trust in research is not confined to communities facing health disparities. Public debates—on the Environmental Protection Agency's environmental standards, for example—pose conflicts that represent a challenge to the current system of scientific governance.²⁹

AN EMERGING TRANSFORMATIVE RESEARCH PARADIGM

Over the last decade, community-engaged approaches have gained traction in NIH research circles for their capacity to reduce or eliminate racial/ethnic health disparities.^30–37 This progress follows substantial funding support for CBPR from the Centers for Disease Control and Prevention (CDC) and multiple foundations, which has helped advance the science.³⁸ The new NIH Clinical Translational Science Awards also represent opportunities for CBPR-based science within academic health centers because of required community engagement.

In addition to funding support, CBPR has gained recognition in academia, with the Institute of Medicine naming CBPR as 1 of 8 new competencies recommended for all health professional students.³⁹ In addition to public health, CBPR has traditions in other disciplines, such as nursing,⁴⁰ and medicine⁴¹ and provider-based research networks have shown corresponding interest in CBPR.⁴² Two new CBPR-oriented journals, Progress in Community Health Partnerships and Action Research, have been launched, as well as 2 new CBPR textbooks.^1,43

As a core concept, CBPR has been framed as an orientation and overall research approach, which equalizes power relationships between academic and community research partners¹ rather than specific qualitative or quantitative research methods.^44,45 CBPR is not a community-outreach strategy for one-way transmission of information, nor a way for universities to claim they conduct community-based research without commitment to changing internal structures. Although specific practices may vary, 8 core principles have been adhered to by CBPR researchers, including genuine partnership and colearning, capacity building of community members in research, applying findings to benefit all partners, and long-term partnership commitments.^46,47 CBPR principles derived from tribes reflect tribal sovereignty,⁴⁸ with tribes determining how research is conducted, including making decisions on publications.^49–51 Although other underserved communities may not have sovereign status, the question becomes how to rebalance power with communities as full negotiating partners.

Through these principles and overall approaches, CBPR has the capacity to address the 6 challenges of translational research described in the previous section.

INTEGRATION OF SCIENCE AND PRACTICE

In one example from the University of New Mexico, the 4-Corners Circle of Services Collaborative (4CC) broke new ground in developing integrated HIV/AIDS care on a large, resource-poor reservation in the Southwest. External validity challenges were overcome by American Indian leadership and the engagement of 4 local partners in the conceptualization and implementation of integrated, culturally supported, and evidence-based medical, mental health, and cultural services for people with or at risk for HIV/AIDS with substance abuse and mental disorders. The hypotheses were that American Indian health services research has authentic partnerships, better outcomes, and less attrition by using CBPR; that indigenized motivational interviewing promotes entry into mental health and substance abuse treatment; and that HIV treatment access and adherence increases with culturally centered, integrated services.

Difficulties involving business as usual and language were minimized through power sharing and “knowledge hybridity,” where knowledge from different sources were integrated into the partnership. The University of New Mexico team contributed cross-training in indigenized motivational interviewing and standard research methods. Indian Health Service partners contributed medical and pharmacy services. The native nonprofit substance abuse treatment agency was the principal investigator and provided cultural, ceremonial, and fiscal leadership. And the tribal community-based organization and tribal health department provided cultural and spiritual knowledge, case management, and referral.

The 4CC promoted trust through negotiation of principles that sought to overcome assimilation legacies and ensure participation—for example, equitable sharing of resources, frequent communication and face-to-face meetings, annual retreats for project review and recommitment, American Indian–based conflict resolution, the hiring of staff from the target population, and deference to cultural beliefs and norms. In addition, the potential for sustainability and health outcomes⁷⁶ was increased because the 4CC staff were predominantly native language speakers working in existing tribal agencies and familiar with near-universal cultural traditions or American Indian–based Christianity, which provided access to extended clan and family support networks. The hybrid training they received also increased their capacity to serve their population in any future jobs. Although the example here is American Indian, these CBPR strategies to enhance and create effective interventions are applicable across diverse populations and settings.

EFFECTIVENESS AT INFLUENCING OUTCOMES

CBPR has demonstrated promise in enhancing the effectiveness of interventions, but there still remains the challenge to better understand how and what type of partnerships and participation most effectively enhance the integration of science and practice. The literature in CPBR has documented system-change outcomes such as policy changes,^1,77,78 practice and program changes such as greater sustainability and equity,^79–83 and community capacity and empowerment outcomes, all of which contribute to health outcomes.^84,85 However, the first cross-site CBPR study to assess promoters and barriers to effective partnerships, and to better understand the added value of CBPR partnerships to produce desirable outcomes, is just being launched.

In 2009, a national partnership, led by the National Congress of American Indians Policy Research Center as principal investigator and collaborating with the Universities of New Mexico and Washington, received 4-year NARCH funding with the specific aims of (1) creating a Community of Practice of academic and community partners, (2) describing the variability of CBPR partnerships through Internet surveys of 80 CBPR sites and 8 case studies, (3) examining associations between participation variables and CBPR capacity and systems outcomes, and (4) identifying promising practices, assessment tools, and future research. The research design is based on a conceptual logic model, which continues to evolve over time and was developed with a national committee of academic and community CBPR experts, with pilot funding from the National Center for Minority Health and Health Disparities (Figure 1).⁸⁶ This new NARCH grant therefore provides further opportunity to solidify the scientific contribution of CBPR to the translational sciences.

In conclusion, CBPR has an important role in expanding the reach of translational intervention and implementation sciences to influence practices and policies for eliminating disparities. The NIH and CDC have identified the benefits of CBPR, such as interventions with greater contextual and cultural centeredness, appropriate recruitment and retention strategies, and strengthened community capacity in research. To achieve these benefits, CBPR addresses a range of intervention challenges; these include partnering with community members to best contextualize an intervention for specific settings, integrating cultural values and practices to enhance sustainability when grant funding ends, and ultimately, democratizing science by valuing communities as equal contributors to the knowledge production process. Within the university, both structural changes and the cultural humility of academics can redress power imbalances and foster the needed trust within partnerships to enable the most effective translation of research within diverse settings.