Keywords: Rural and coastal, health, community engagement, social participation, research and evaluation design, NIHR, diversities, underserved populations.
Background:
Rural and coastal communities are underrepresented in health and social care research. This can impact the quality of the research by reducing the generalisability of findings and/or by limiting the ‘strength’ of the research methods being used by researchers. The result of this is twofold. Firstly, there is limited understanding of health and social care as it operates in rural settings and, secondly, research conclusions give an incomplete picture of the entire population. It is also unfair, from an equity perspective, that groups traditionally underserved by research continue to be excluded from studies because of where they live. A Toolkit for Increasing the Participation of Rural and Coastal Communities in Health and Social Care Research has recently been developed under the leadership and collaboration of a multidisciplinary group of researchers, stakeholders, and residents from a variety of backgrounds. It includes those who live, work, volunteer and undertake health and care research with rural and coastal communities.
Aim of the study:
The presentation introduces the Toolkit, funded by the National Institute for Health and Social Care Research (UK, East Midlands Clinical Research Network). If focuses on the rationale for the toolkit, the seven guidlines developed and its real world applications. The guidance is intended for use at different stages of research and evaluation, including: before and during public/stakeholder engagement; informing collaborative research design; and shaping studies formatively as they develop in real time. Finally, they provide a summative tool to reflect on completed studies, to promote learning that can be applied to future engagement, funding bids, Continuing Professional Development, and inform future studies.
Methodology:
Hayden Bird, the co-facilitator and one of the authors of the Toolkit for Increasing the Participation of Rural and Coastal Communities in Health and Social Care Research will seek to reflect on engagement and collaboration with diverse stakeholders and communities. This project involved a rapid evidence review, conducting focus groups and interviews, developing case study vignettes and a workshop to refine and develop guidance content. Hayden is currently a Post-Doctoral Research Associate at the Lincoln Institute for Rural and Coastal Research, a team of researchers dedicated to bringing together rural and coastal health and wellbeing research to help understand and tackle the place-based inequalities experienced in these communities..
Results:
The reasons for the ongoing exclusion of rural and coastal communities are multifaceted. The literature tells us it is likely due to difficulties with travel time and/or communication technology, comparatively higher costs of involving rural and distanced residents, cultural aversions, and values and concerns about privacy in small communities. This toolkit shows that there are other more nuanced barriers, but also potentially more effective ways of including residents of isolated communities that can only be known by engaging directly with them. In this respect, inequities experienced in accessing services are somewhat mirrored in the challenges of engaging these communities in research. There are practical and emotional implications for both those undertaking research and those who are included as participants.
Conclusions:
Despite being home to significant national assets including health-supporting blue and green spaces rural and coastal communities are disproportionately vulnerable to deprivation, economic shock, climate change, higher disease burdens, and inequalities in health and wellbeing outcomes. Rural populations, small seaside towns and sparse settings are generally less ethnically diverse and have higher proportions of older people. Access to health services and hospitals is more challenging in rural areas with reduced services, poor transport infrastructure, and consequently greater cost incurred by residents. Although the COVID-19 pandemic reaffirmed the importance of access to timely health, care, and wellbeing services, the impact on access to services and wider social determinants of poorer health remains omnipresent. The Toolkit highlights a more lateral and inclusive approach to appreciating Equalities, Diversities and Inclusion in developing both approaches to research and service delivery. One that explores diversities of experience that are shaped by place-based characteristics and often complex interactions.
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