Building Coalitions and Capacity: Outreach and Engagement of American Indian Communities | Stephanie Rieder, MD, PhD
Stephanie Rieder, MD, PhD
People who identify as American Indian or Alaskan Native (AI/AN) are more likely to be diagnosed with certain types of cancer and have higher rates of mortality than their non-Hispanic white counterparts. There is a dearth of research that explores the impact of gynecologic cancers among this population and even less information regarding regional differences.1 Cancer incidence varies widely by geographic region and cancer type. Thus, aggregation of data at the national level can mask differences.2 Furthermore, different regions and communities have site-specific risk factors, barriers to care, and psychosocial needs that should be addressed by cancer centers and researchers with attention to local interests and concerns.
Within this context, the importance of community outreach and engagement in research and care delivery cannot be overstated. Through developing institutional-community coalitions we can address issues around accessibility, outreach, and accountability. These partnerships promote community-engaged initiatives, allowing greater validity and benefit of programs, with the ultimate aim of improving health and well-being of involved communities. University of New Mexico Comprehensive Cancer Center initiatives have included establishing a Patient Advisory Board, made up of diverse stakeholders, including representatives from Pueblo communities and Navajo Nation, with which researchers and clinicians discuss research questions and outcomes, outreach initiatives, or educational materials. Additionally, visual representation of and imagery relevant to local Indigenous communities has been emphasized as an important aspect of promoting health and equity.3
It is important to engage community members at all phases of the process, from understanding a problem to implementing and evaluating plans and strategies to address it. Community-based participatory research (CBPR) allows for collaborative capacity-building, allowing community empowerment through the development of solutions and promotion of equitable conditions that support the well-being of members.4 Scholars at our institution have promoted methodologies, including CPBR and Database of Individual Patient Experiences (DiPEX), that center patient voices and experiences and commit to collaborative project design and data analysis that reflects community priorities. These approaches recognize that all partners bring diverse experiences and expertise and emphasize that reciprocity is essential.5,6 This requires cultural humility, defined not only as being open to other cultures, but committing to acknowledging and rectifying clinician and researcher positions of power in relation to community members.4 This is even more necessary in Indigenous communities in which historical and ongoing injustices impact health in myriad ways.
As clinicians and researchers, we should attune to local contexts that determine what is required to achieve effective engagement. We must commit to long-term on-going collaborations that emphasize Indigenous communities’ priorities and sustainable solutions over outcomes that are individualized and easily measurable, but leave oppressive power structures intact. Institutions at all levels should develop infrastructure that can support the collection and review of outcome data that supports community partnerships, to assure validity and accountability, and contributes to community-based project and program evaluation.7 We should embrace social justice in clinical practices and research through promotion of new models of representation and interpretation and research methodologies that center AI/NA voices.
References
1. Bruegl AS, Joshi S, Batman S, Weisenberger M, Munro E, Becker T. Gynecologic cancer incidence and mortality among American Indian/Alaska Native women in the Pacific Northwest, 1996–2016. Gynecol Oncol. 2020;157(3):686-692. doi:10.1016/J.YGYNO.2020.03.033
2. Melkonian SC, Weir HK, Jim MA, Preikschat B, Haverkamp D, White MC. Original Contribution Incidence of and Trends in the Leading Cancers With Elevated Incidence Among American Indian and Alaska Native Populations, 2012-2016. This Am J Epidemiol. 2020;190(4):528-538. doi:10.1093/aje/kwaa222
3. Environmental Factor – November 2021: Artist uses tribal symbolism, traditions to communicate science. Accessed September 26, 2023. https://factor.niehs.nih.gov/2021/11/beyond-the-bench/scientific-art
4. Wallerstein N, Minkler M, Carter-Edwards L, Avila M, Sanchez V. Improving Health Through Community Engagement, Community Organization, and Community Building. In: Glanz K, Rimer BK, Viswanath K, eds. Health Behavior: Theory, Research, and Practice. Jossey-Bass; 2015:277-300.
5. Davis S, Pandhi N, Warren B, et al. Developing catalyst films of health experiences: an analysis of a robust multi-stakeholder involvement journey. Res Involv Engagem. 2022;8(1). doi:10.1186/s40900-022-00369-3
6. Sanchez-Youngman S, Adsul P, Gonzales A, et al. Transforming the field: the role of academic health centers in promoting and sustaining equity based community engaged research. Front Public Health. 2023;11. doi:10.3389/fpubh.2023.1111779
7. Eder M. Aligning clinical research ethics with community-engaged and participatory research in the United States. Front Public Health. 2023;11:1122479. doi:10.3389/FPUBH.2023.1122479/BIBTEX
Stephanie Rieder, MD, PhD is an Assistant Professor of Gynecologic Oncology at University of New Mexico. Her research interests are cancer care equity, particularly among rural communities and Native American and Hispanic patients, clinical trial access and diversity, and community-based research methods.