WFU HES Diversity, Equity, and Inclusion Update

Dr. Irby has been involved in several NIH efforts to bring communities front-and-center in the conduct of health research. In this month’s newsletter, she explores some of these ongoing efforts and relates them to a very exciting project she recently launched with the Lumbee Tribe of North Carolina. Read on below for more on this exciting work!

New Experiences in Tribal-Led Research

By Megan Irby, PhD

In September, I was fortunate to have been awarded a grant in partnership with the Lumbee Tribe of North Carolina (under the NIH HEAL and NCREW initiatives), which will support our team in conducting community-engaged and Tribal-led research to address substance use and pain from an Indigenous Knowledge perspective. This award is unique in that the award was not granted to a principal investigator or an academic institution – the award was granted to the Lumbee Tribal community. As a part of this opportunity, the NIH NCREW program convened the 13 awardees in October for an “NIH Teaming Meeting” led, in part, by Drs. Nora Volkow (NIDA) and Walter Koroshetz (NINDS). Together with Tribal leaders from across the United States and NIH directors and program officers, our small group of research partners engaged in sacred ceremony to unite us in our common purpose, followed by 2.5 days of intense project planning. To the sound of Native drums and the scent of burning sage, Tribal leaders bestowed Native blessings upon us with eagle feathers and tobacco leaves, and then…we danced. Yes…I danced with Nora Volkow and Walter Koroshetz; we talked about our families, our careers, and the need for transformative research. It was more of a spiritual experience than a research meeting, and an incredibly profound and meaningful way to kick off a research project. In addition to honoring the sacred rituals of our Native and Indigenous partners, we spent a great deal of time discussing changes at the NIH and the need for a “revamping” of our research culture to align with the needs, priorities, concerns, and assets of communities. Drs. Volkow and Koroshetz described the “problems” of traditional research paradigms that often lack inclusion of “real community voices,” and shared their visions for future NIH-funded projects. They described upcoming initiatives to enhance research participation among marginalized communities and new mechanisms to support and fund communities as the leaders of future research endeavors, for the purpose of building a more equitable future for all people.

They explained that, as academic researchers, we stand at a pivotal moment in the evolution of health research. The NIH has made an unprecedented commitment to advancing health equity and meaningful community engagement, recognizing that genuinely transformative and impactful science happens when we work alongside communities as true partners in research. As we all know, many marginalized community groups have been excluded from or underrepresented in health research for far too long, which has contributed to persistent health disparities. The NIH recognizes that addressing these disparities requires a fundamental shift in how we conduct research, and that shift will require a change at all levels – with the NIH leading the charge and with researchers willing to rethink the norms of research culture. This shift toward more equity-focused, community-engaged research isn't just about checking boxes or balancing planned enrollment tables. It's about fundamentally changing how we define research questions, design studies, implement interventions, disseminate findings, and translate what we’ve learned into real-world practice. Making these changes, however, won’t be easy, and requires that researchers attend to scenarios and situations that might otherwise seem extraneous to research. Some key challenges of community-engaged research are:

  1. Building and repairing trust with community groups who’ve had negative experiences in the context of healthcare and research requires a great deal of time, transparency, genuine commitment to partnership on community terms, and willingness to relinquish power and ownership of research processes.
  2. Sharing decision-making power and supporting communities as the leaders of research agendas requires that researchers be self-aware, reflective, humble, and willing to defer to the ideas of community partners.
  3. Understanding dynamics of non-academic collaborations and managing differences in priorities, perspectives, values, and knowledge requires open communication, flexibility, willingness to compromise, and genuine attempts to align research processes with community “ways of knowing”.
  4. Recognizing that community capacity and resources may not be as robust for community partners as they might be for an academic research team, researchers must work around community schedules, identify additional funding sources to support community involvement, and provide training and logistical support for community partners to maintain meaningful involvement. In our project with the Lumbee Tribe, this challenge was particularly difficult to manage as the Tribe initially lacked necessary infrastructure to support grant management and regulatory oversight, and the Tribe’s processes for approving the award budgets required review from Tribal members before subcontracts could be negotiated with partnering investigators and institutions. To manage these challenges, the NIH supported the Tribe with additional funds to hire experienced administrative staff and train Tribal members to support a Tribal IRB.
  5. Supporting sustainability and continuity to maintain long-term community-academic partnerships beyond the life of a grant award requires that researchers consider and plan for sustained engagement from the outset, which also means leveraging resources to support communities in owning and continuing research projects when initial funding has expired.
  6. Measuring the impact and success of research using non-traditional and community-informed metrics requires that researchers develop appropriate evaluation methods that are culturally relevant and meaningful to communities, and share findings with community partners in ways that are approachable and actionable.

Upcoming NIH Changes in Support of Community-Engaged Research

To address these challenges and support the pursuit of community-engaged research approaches in future NIH grant applications, the NIH's renewed commitment to health equity and community engagement will be reflected in several key initiatives: