Conducting Research That Matters to Rural Practice and Communities

Introduction to Our Practice-Based Research Networks

The WWAMI (Washington, Wyoming, Alaska, Montana, and Idaho) region Practice and Research Network (WPRN) and Oregon Rural Practice-based Research Network (ORPRN) are 2 practice-based research networks (PBRNs) that partnered to create the Primary Care Rural and Frontier Clinical Trials Innovation Center (PRaCTICe), which was 1 of 3 research network hubs initially awarded by the NIH CARE for Health^TM Initiative. The 2 PBRNs have over 2 decades of experience conducting research in primary care and communities across 6 states with large rural and frontier areas. These PBRNs have engaged over 308 primary care practices since 2019 and have 33 active clinical research studies that have enrolled 59,249 participants in the past year. Our networks’ infrastructure and experience support codevelopment and implementation of solutions to overcome challenges of conducting collaborative research in rural settings.

Considerations for Conducting Research with Rural Communities

The unique considerations for conducting research with rural communities can broadly be categorized into 4 domains: community, cultural, investigator and topical. At a community level, the context includes socioeconomic, educational, geographic (eg, distance to health care, lack of transportation), and digital (eg, lack of broadband) considerations. Rural communities often have higher levels of workforce shortages that on one hand may lead to limited capacity for local staff to support research activities but conversely may lead to greater flexibility as one individual serves in multiple roles (eg, clinical manager who serves on local public health advisory board while also being the lead contact for a research study). Cultural barriers include perceptions of rural-urban political differences and a lack of trust from rural communities in frequently urban-led health care systems and academic institutions. Conversely, cultural strengths include strong local relationships and a frequent willingness to step up and solve community-identified problems by engaging needed partners or embracing new social roles. At the investigator level, most academic institutions and investigators are based in urban areas and may lack understanding of rural contexts. Funding mechanisms infrequently foster engagement in rural communities or inadvertently exclude rural settings due to smaller sample sizes and higher resources required to support participant recruitment, resulting in many investigators not being trained in or familiar with engagement methods or adapting/codesigning studies with rural communities. From a topical perspective, many biomedical research studies lack relevance for rural clinical settings, are not aligned with rural clinical workflows and provide few incentives to participate, given rural needs often center around workforce staffing and retention, care delivery and financial stability, prevention, and existing evidence implementation. In addition, adaptations to studies to foster rural participation (eg, chart audits to identify eligible patients, care delivery by medical assistants rather than nursing staff) can be viewed by the scientific community as a lack of fidelity to the study design.

Example Solutions to Meaningful Engagement for Rural Practices and Communities

To bridge these differences, genuine engagement with rural patients, clinicians and community representatives is needed. Table 1 provides examples of solutions developed and refined by WPRN and ORPRN, and their partnering clinical and translational science award institutes (Oregon’s Clinical and Translational Research Institute and Washington’s Institute of Translational Health Sciences) over 2 decades. These strategies support engagement with rural communities and practices across time – and facilitate individual studies. Ideally, rural partners are engaged longitudinally and in the design phases of each study to inform both topical priorities and study design adaptations, which can strengthen and reinforce relationships and trustworthiness.

Engagement leads to the recognition of the need for flexibility within studies. Lack of flexibility in response to patient, clinician and staff feedback may result in a lack of generalizability in study findings and damage hard built community-academic partnerships. When working with rural communities, investigators may benefit from principles of pragmatic clinical trials and historic learnings from practice-based research.^3,4

To support meaningful engagement, investigators and funders must recognize the time and resources needed to participate from rural communities. Often, time spent by clinicians providing feedback on a study means lost income for the practice and clinician – or additional hours of work to compensate. These costs need to be considered to build relationships and enable sustainable partnerships. In the engagement activity examples from Table 1, we have prioritized compensating all participating members to offset these costs. Embedding research staff into rural communities and practices is another way to promote longitudinal engagement and to enhance research feasibility (eg, regional engagement specialists in Table 1). For example, ORPRN has successfully embedded research facilitators in rural communities by intentionally recruiting staff who already live in towns across the state with each staff member covering a broad geographic region that may encompass several counties and 30 to 50 active partner clinics. These strategies reinforce trusting relationships and inform academic institutions and investigators about community priorities.

Developing solutions to engage rural practices in research took the WPRN and ORPRN decades of effort and investment. Network leadership, staff and rural partners continue to learn bidirectionally each day. To achieve these solutions – particularly considering regional transitions in staffing, leadership, and organizational structures – engagement needs to be an ongoing top priority and investment.

Implementing solutions to conducting research in rural practice and communities that are meaningful requires sustainable infrastructure funding for rural settings that extends beyond individual studies. Successful examples include support from institutional Clinical Translational Science Awards (CTSA) for community and practice-based research programs, Institutional Development Award for Clinical and Translational Research (IDeA-CTR) to support community engagement, engagement awards from the Patient-Centered Outcomes Research Institute (PCORI), and historic funding and support from the Agency for Health care Research and Quality (AHRQ) for practice-based research networks. Support for infrastructure to enable rural clinical practice and community engagement should be akin to support for laboratory space, equipment, cell cultures and genetic samples. While the latter are widely accepted to be core equipment and facilities that transcend studies, enable efficient research, and are funded longitudinally, support for rural practice and community engagement is often study specific and siloed. The new NIH CARE for Health^TM Initiative initially focused on rural practices and communities is a much needed recognition on the importance of engagement infrastructure.² Ongoing funding needs to prioritize this work to sustain how research is relevant to and feasible in rural settings.

Specific to rural communities, there needs to be a recognition of how research structures are built for and around cities. Labeled as “structural urbanism,” current mechanisms frequently fund per individual instead of per community, which does not recognize the needs in rural communities.⁵ Funders are encouraged to recognize that building infrastructure and funding research capacity in rural communities may cost more per capita due in large part due to geographic isolation. Increasing investments will help with understanding and addressing heterogeneity within rural communities. It will also advance methods for conducting research in rural settings – which have sparse populations and are increasingly intersectional (eg, rural and racially/ethnically diverse, rural and low-income). Rural subpopulation groups often need tailored methods of outreach for recruitment and engagement.

Conducting research in rural practice is one step to improving rural health equity. Substantial investment in sustained engagement of rural communities, individuals, and practices will lead to improvements in rural health care and health outcomes. Funding initiatives like CARE for Health and ongoing investments from Clinical Translational Science Awards are core to advancing the health of America’s rural communities.