American Indians (AI) are at high risk for developing chronic medical conditions, including hypertension, diabetes, and kidney disease, and yet are among the least represented people in healthcare research.

In 2019, Christine Daley, PhD, SM, MA, formerly of the University of Kansas School of Medicine, now Chair of the Department of Community and Population Health and Co-Director of the Institute for Indigenous Studies at Lehigh University, received a PCORI Engagement Award to develop a one-year training program for American Indian community members. The program was designed to offset mistrust of the medical system and encourage community participation in patient-centered outcomes research (PCOR).

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Daley and her team ultimately created the American Indian Health Research and Education Alliance (AIHREA) Native Research Ambassador Program (N-RAP). The program provided foundational training in PCOR, comparative clinical effectiveness research (CER), and community-based participatory research (CBPR) methods, grant writing, and the ethical conduct of research.

New Directions for Research

Daley reflects that the project has taught her and her team "to focus on new directions for research, particularly related to mental health and youth," and has had "a positive impact on communities, providing new ways for tribal communities to work with researchers."

An initial cohort of 20 Native Research Ambassadors was trained through the program to spearhead future research efforts on behalf of their individual communities. The eventual goal is for N-RAP to become a lasting program that fosters enduring community stakeholder engagement in research.

Celebrating Self-Advocacy and Community Collaboration

N-RAP was designed to provide tangible training on how to translate community-engaged research findings into real world settings.

Ryan Goeckner, MA, doctoral candidate in the Department of Anthropology at The Ohio State University and member of the project team, explains that CBPR “empowers community members to advocate for themselves and focus on community-led decision making.”

Goeckner notes that this is particularly important for American Indian communities that already connect through pan tribal organizations, but may be geographically and socioeconomically diverse, and have unique needs locally. The hope is that involvement in community-based research will ultimately help make participants’ “health goals and vision of the future for their communities,” a reality, adds Goeckner.