Abstract
Medical mistrust in rural Appalachia, particularly in West Virginia, originates from a long history of institutional betrayal. Over time, experiences fostered intergenerational skepticism, embedding wariness of health care and research into Appalachian cultural memory. The distrust from structural neglect—hospital closures, provider shortages, and underinvestment—has compounded this mistrust, leaving communities hesitant to engage with outside institutions. Previous initiatives have aimed to build trust through shared decision-making and cultural awareness, but they do not answer all the challenges in Appalachia. To bridge this gap, the West Virginia Clinical & Translational Science Institute (WVCTSI) developed the Ambassadors for Community Health Research (ACHR) program. Adapted from Colorado’s Immersion Training, the ACHR is a year-long initiative that trains residents as liaisons between their communities and research teams. Ambassadors receive structured training in research ethics and health communication, not as recruiters but as relationship builders who facilitate two-way exchanges of concerns, insights, and evidence. The ACHR program transforms research participation from a transactional encounter into a collaborative partnership. This sustained, culturally authentic model offers a roadmap for rebuilding trust and enhancing the relevance, ethics, and impact of clinical research in rural or underserved regions.
Keywords
Medical mistrust is not a new concept. It has existed for decades, if not centuries, and continues to disproportionately affect marginalized, underserved, and rural communities (Thomas et al., 2023). While discussions around mistrust often focus on urban disparities, rural populations have a long and distinct history of institutional betrayal that deserves equal attention (Lister & Joudrey, 2023).
West Virginia is among the most rural states in the nation, with its residents living predominantly outside metropolitan areas. Understanding mistrust in this region requires looking beyond statistics and into the lived experiences and cultural memory of its people. In the southern part of West Virginia, coal mining not only shaped the economy but also the health care landscape. Historically, miners relied on company doctors who often minimized or dismissed work-related injuries (Derickson, 1989). This trend continues today as physicians with financial ties to coal companies sometimes favor operators in black lung benefit claims (Friedman et al., 2021). These experiences taught generations of miners that health care could serve corporate interests rather than their own well-being.
That legacy left a deep and lasting mark. There are miners who developed a collective sense of skepticism and self-protection, recognizing that they were not receiving the care they deserved. This wariness was passed down through families, becoming part of the cultural fabric of Appalachia (Alspaugh et al., 2023; McAlearney et al., 2012). Structural neglect, manifested through hospital closures, provider shortages, and chronic underinvestment in rural health infrastructure, has only reinforced that divide (Morrone et al., 2021). As a result, clinical research in these communities is often viewed with hesitation or outright distrust, especially when introduced by outside institutions (Nelms et al., 2014).
Models to Restore Trust
Over the past few decades, initiatives like Patient-Centered Care (PCC) and Cultural Humility Training have become central to health care reform. PCC emphasizes collaboration between patients and providers through shared decision-making and a focus on patient values. In theory, this approach should foster trust by ensuring patients feel heard and respected. However, implementation often falls short, particularly in overburdened rural clinics where time and staffing are limited (Thomas et al., 2023).
Similarly, cultural humility programs were intended to help health care providers better understand diverse backgrounds, traditions, and beliefs of the patients they serve (Pratt et al., 2020). While these trainings are valuable, they often fail to capture the complexity and nuance of rural identity (Alspaugh et al., 2023). Often, they are delivered as one-time sessions, turning what should be an ongoing process into a “check-the-box” exercise (Grieve & Murthy, 2023). Most models were designed around racial and ethnic diversity in urban contexts, leaving the unique cultural dynamics of rural communities, especially those in central Appalachia, largely unaddressed (Lister & Joudrey, 2023).
These shortcomings reveal a critical gap: traditional engagement strategies do not always translate to rural life. Programs that succeed in metropolitan areas often assume institutional trust, access to care, and consistent health care infrastructure, all factors that are frequently absent in Appalachia. To address this, new models must move beyond short-term training and instead build sustained, reciprocal relationships between communities and researchers.
Shifting Toward Reciprocal Relationships in West Virginia
One example of this shift is the Ambassadors for Community Health Research (ACHR) program developed by West Virginia Clinical & Translational Science Institute (WVCTSI). The program was designed to directly engage rural residents in the research process, helping bridge the divide between academic institutions and the communities they serve.
When WVCTSI developed the ACHR program, it looked outward for inspiration before tailoring the concept to West Virginia’s unique social and cultural landscape. The framework drew from the Colorado Immersion Training (CIT), a six-month initiative offered by the Colorado Clinical and Translational Sciences Institute (CCTSI). CIT is designed to prepare researchers for community-engaged and translational research by immersing them in the lived realities, priorities, and perspectives of local communities.
While CIT provides intensive, short-term immersion for researchers seeking to understand communities, WVCTSI recognized that trust in Appalachia could not be built through immersion alone. Rural residents of West Virginia often hold deep-seated skepticism toward outside institutions, an attitude shaped by decades of economic exploitation and health care inequities. Building trust in this context would require not just exposure or dialogue but sustained presence, partnership, and accountability.
From this realization, WVCTSI adapted the CIT model to create an approach that enhanced engagement between community members and researchers. The result was the ACHR program, a year-long initiative designed to strengthen partnerships between rural communities and the research institutions that serve them. The ACHR framework prioritizes long-term relationship-building over temporary engagement, aligning with Appalachian values of persistence, reciprocity, and community care.
The ACHR program is structured around a powerful principle: communities are not just participants in research, but they are also partners. ACHR trains and empowers trusted residents, known as Ambassadors, to serve as liaisons between their communities and research teams across West Virginia. Through this model, the program translates the lessons of CIT into a sustained, community-led effort grounded in Appalachian culture.
Each Ambassador completes structured training that covers topics such as research ethics and health communication. Unlike traditional outreach programs, ACHR does not position Ambassadors as recruiters or spokespersons for research institutions. Instead, they function as relationship builders, facilitating conversations, identifying gaps in understanding, and supporting opportunities for collaboration.
The program emphasizes reciprocity and shared learning. Ambassadors bring forward community concerns, misconceptions, and ideas, while researchers share insights and evidence that can inform local health initiatives. This two-way exchange helps ensure that research projects are relevant, respectful, and responsive to community needs. For many rural residents, these interactions represent their first meaningful connection with a research institution that values their perspective.
Another defining feature of ACHR is its relationship with long-term commitment. Ambassadors have already established a clear commitment to their communities through ongoing service through work in community-based programs designed to alleviate poverty, as well as programs designed to mentor K–12 students in Science, Technology, Engineering, and Mathematics (STEM). They also work in local health departments and local non-profits. The strength of these relationships means that members of the community are willing to listen to the Ambassadors. Working in collaboration with WVCTSI and university extension offices, Ambassadors help promote community forums where residents can openly share their views on research participation, health priorities, and ways to build trust. This ongoing presence distinguishes ACHR from short-term engagement models and reflects a deeper understanding of how trust develops in Appalachia, through continuity, visibility, and genuine care.
The structure of ACHR allows it to operate at both the grassroots and institutional levels. While Ambassadors collaborate directly with community members, WVCTSI supports their efforts through ongoing mentorship, professional development, and logistical resources. This dual structure ensures that community engagement is not a side project but an integral component of research planning and implementation.
The success of the ACHR program is enhanced by the cultural experience and credibility of the Ambassadors themselves. In communities where skepticism toward outside institutions runs deep, trust cannot be imposed; it must be earned. By partnering with Ambassadors, researchers are invited to foster their own trust within those same communities. Ambassadors’ roles extend beyond formal outreach; they represent a bridge between two worlds that have not always understood each other.
Because Ambassadors share the lived realities of those they serve, they can engage with community members in ways that feel authentic and grounded. One way the Ambassadors created a sense of safety and trust was to build connections with communities in locations where they naturally gather such as local churches, community centers, and trusted doctor’s offices. They understand the language, humor, and values that shape daily life in West Virginia, and they use that understanding to make research approachable. When explaining a study or addressing misconceptions, they draw from familiar experiences rather than institutional jargon (Kennedy-Rea et al., 2021). This sense of relatability helps reduce fear and uncertainty about research participation, feelings that often stem from generations of exclusion or misunderstanding.
WVCTSI’s commitment to this model mirrors the values that shaped the Colorado CIT approach, but with a distinctly Appalachian focus. Instead of a single immersion event, ACHR sustains engagement across time, allowing relationships to grow and deepen through repeated interactions. This consistency demonstrates reliability, a key component of trust in regions where institutional promises have often gone unfulfilled.
The ACHR program positions people as the mechanism of trust. Ambassadors function as connectors who translate not just language but also perspective, helping researchers understand community contexts while helping residents see that research can reflect their priorities and values. Over time, this process transforms the relationship between communities and institutions from one of caution to collaboration. It is a reimagining of what research partnerships can look like in rural Appalachia. By building local relationships and sustained presence, WVCTSI has created a model that challenges traditional barriers between researchers and community members.
Implications for Policy
The ACHR program offers a framework that can inform future research policy and community engagement strategies across similar rural or underrepresented regions. Policymakers and research institutions can learn from WVCTSI’s long-term investment model, one that values relationship-building as a measurable outcome. Incorporating community liaisons like Ambassadors into research infrastructure could strengthen ethical oversight, ensure local perspectives are integrated from the design phase forward, and improve study recruitment and retention.
In the future, expanding programs like ACHR could help shape state and national policy. For example, formal partnerships between academic institutions, public health agencies, and community-based organizations could standardize the role of local Ambassadors as part of research governance. This structure could serve as a pathway for sustained collaboration, workforce development, and more equitable health outcomes.
Implications for Practice
The ACHR framework also highlights a crucial shift in how success is measured in community-engaged research. Rather than focusing solely on recruitment numbers or publication outputs, programs should evaluate success through indicators of trust, relationship strength, and reciprocity. These outcomes may take longer to achieve, but they lay the foundation for lasting impact, both within the community and across the broader research landscape. This relational foundation opens the door for lasting partnerships between researchers and rural communities. As trust continues to grow, there is potential for greater participation in future studies and more meaningful collaboration in shaping the direction of research itself.
The ACHR program demonstrates that rebuilding trust in research requires more than outreach; it requires transformation. WVCTSI has created a model that honors Appalachian identity while advancing clinical research. As the program continues to evolve, it offers a roadmap for how institutions can move beyond engagement as a checkbox, creating space for Appalachians to shape their relationship with research.
Footnotes
Authors’ Note:
The project described was supported by the National Institute of General Medical Sciences, U54GM104942. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Author Contributions
SK-R conceptualized the program. ABS, HLH, and BG developed the program. CH and HLH wrote the original draft. All authors edited and reviewed the manuscript.
