About the Jegna Council

The Jegna Council is an advisory group that guides the Robert Wood Johnson Foundation New Jersey grantmaking team as they strive to more effectively center equity in their work.


Members of the Jegna Council have developed pieces to highlight areas of their work that intersect with the Foundation’s priorities in New Jersey. Each of the articles reflect members’ thoughts on different areas that contribute to health inequities and ways that we can create a more equitable healthcare workforce, expand housing options, expand community research, and improve maternal health outcomes.

The following article was authored by Jegna Council Members Leslie Kantor, professor and chair of the Rutgers School of Public Health, and Gisele Pemberton, DrPH, MPH, CHES, director of the National Center for Training, Support, and Technical Assistance.

An Introduction by Maisha Simmons

Equitable and actionable research demands that communities be meaningfully engaged in relevant studies. Respect, representation, and research rigor are key ingredients for bringing academics and community members together on level ground so they can realize the mutual benefits of true partnership and pursue change, explained below by Leslie Kantor and Gisele Pemberton.

Building the necessary trust requires acknowledging the legacy of exploitation that foments present-day suspicion towards research. The Tuskegee experiment, in which Black men with syphilis went untreated so that researchers could study the natural course of the disease, is appropriately cited as one of the most egregious examples of abuse. But it did not occur in a vacuum, and while safeguards are now in place to prevent the recurrence of such flagrant exploitation, community interests are still routinely overlooked.
 

Maisha Simmons/ RWJF Maisha Simmons, RWJF senior director of New Jersey Grantmaking

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.

 

The views expressed here do not necessarily reflect the views of the Robert Wood Johnson Foundation.

A Healthier, More Equitable New Jersey

To honor the legacy started by our founder, Robert Wood Johnson II, we at RWJF remain committed to improving health and advancing health equity for all in New Jersey and beyond.