Far too often, researchers “helicopter into” communities with a predetermined agenda, collect data, and then depart, pursuing hypotheses developed without input from those who are supposed to benefit from the findings and omitting the most basic step of communicating learnings afterwards. This top-down approach allows outsiders to congratulate their own efforts to help communities while doing nothing to address underlying inequities. Little wonder that there is such distrust of researchers and academic institutions. The failure to position community members as research leaders—experts prepared to define their own priorities, identify the questions they want answered, craft viable research strategies, and propose community-grounded solutions—is a disservice to public health practice and undermines the goal of identifying practical, results-oriented solutions.
While any move to broaden participation beyond university walls is welcome, bringing executive-level leaders from community-based organizations to the table or creating so-called community advisory boards exclusively comprised of professionals is not enough. More diverse perspectives and lived experiences need to be integrated into research. Resonant solutions are possible only when informed by representatives who fully reflect the local realities of culture, language, class, literacy, geography, and the distribution of political power.
The two of us have seen the results when design and implementation processes recognize community strengths and facilitate full participation: genuine grassroots leadership can emerge. Leslie initiated an intensive process to design a maternal health study in which community members and researchers are on equal footing at every step. Although some of the university training requirements were onerous for community members, a group of six Black mothers persevered to lead all aspects of the study, including choosing the research methods, writing the interview guide, conducting interviews, and interpreting results. The full team of community and Rutgers researchers is now presenting findings and recommendations.
In another approach similarly grounded in the community, Gisele helped to oversee PODER en SALUD (Power in Health), a collective effort by Latino-identified organizations to respond to COVID-19 with evidence-based educational resources that are culturally and situationally relevant. Together, this group developed and disseminated more than 85 multilingual, population-specific communication products to address the myths and miscommunication associated with the pandemic in the Latino community and to promote health-protecting action.
Both projects highlight best practices and remind us that the path to engaging people without a traditional research background must be navigated strategically. Pragmatism demands that research protocols have to fit, at least to some degree, within established frameworks. We may bristle at some of the resulting constraints and work to diminish hierarchies that place more value on some ways of knowing than others—but waiting for systems to be completely overhauled means missing immediate opportunities to foster equity. For now, community-based research methods and analyses have to respect certain conventions if funders, peer-reviewed journals, and policymakers are to consider their findings credible. Tailored training and capacity-building can support community members to comply with unfamiliar academic norms.
At the same time, the limitations of traditional research practices suggest that existing systems need to become more flexible. Whether classically trained researchers learn to apply authentic community-engagement techniques themselves, or join with community-based organizations to amplify local voices, they can redefine their role to become guides and mentors, offering support that allows communities to leverage their own data and knowledge, and ultimately to take charge.
At the university level, it is neither necessary nor appropriate to uniformly impose compliance standards that were originally established to ensure that faculty and students withstand Institutional Review Board (IRB) scrutiny. Rutgers University is among the universities piloting human subjects training specifically designed for community members and community-engaged research. Community IRBs, which facilitate research conducted by organizations outside traditional academia, are another alternative that can be more widely adopted.
Until community-engaged research enjoys a larger share of the resources available from the most prestigious funders, academic research will continue to prioritize approaches that garner larger grants and more scientific publications and take less time than investing in true community partnerships. But if the goal is moving toward health equity, there is no other choice than to promote inclusion and shared authority. Current research designs have contributed to a society in which health disparities are rampant. It will take commitment at every level of the research hierarchy to act differently and advance health and justice for all.