Keywords
ethics, practice-based research
Disciplines
Health Services Research
Abstract
Introduction: Partnering with rural primary care in practice-based research allows researchers access to a vital segment of the health care sector and a window into some of the most vulnerable, high-risk, high-need patient populations. The readiness for rural primary care to fully embrace research partnerships, however, is often tempered by ethical questions in conducting research in close-knit settings. This research provides practices with a refined decision support tool for evaluating the fit of research opportunities for their unique practices.
Materials and Methods: A two-phase effort was conducted to glean insight from currently available literature on ethical considerations in practice-based research and augment this information by consulting with state-based subject matter experts. Qualitative data were gathered through semi-structured interviews with key stakeholders at each of the West Virginia medical schools.
Results: The literature clearly acknowledges the need to ensure ethical standards in practice-based research – from the standpoints of the clinician and the researcher. The need to ensure comprehensive, culturally appropriate institutional review board approval is essential in developing and safeguarding participants. From discussions with subject matter experts, we find complementary guidance. However, tempering this sentiment is an overall caution of the unique role of rural primary care in representing and protecting the needs of the community. Five fundamental cautions regarding the conduct of practice-based research in rural settings are here identified, spanning the protection of individual patients, their communities, and clinicians.
Discussion: Findings from this study can support and empower primary care clinicians and practices, especially those in rural and close-knit communities, to address essential considerations in practice-based research. Results allow for framing of a refined decision support tool for primary care practices and clinicians to use in evaluating the fit of research opportunities for their unique practices, instilling a sense of shared power in the research process by better equipping primary care to proactively engage in substantive dialogue with research partners.
