- Jude Kornelsen,
- Christine Carthew,
- Kayla Míguez,
- Matilda Taylor,
- Catherine Bodroghy,
- Kathryn Petrunia &
- Delia Roberts
BMC Health Services Research volume 21, Article number: 987 (2021)
Background: The challenge of including citizen-patient voices in healthcare planning is exacerbated in rural communities by regional variation in priorities and a historical lack of attention to rural healthcare needs. This paper aims to address this deficit by presenting findings from a mixed methods study to understand rural patient and community priorities for healthcare.
In recent decades, there has been recognition of the importance of a broad coalition of key stakeholders in healthcare decision-making and the attendant move from an administratively-oriented process to one that prioritizes diversity of voices. Decision-making tables now include participation from those providing and receiving care alongside others with a vested interest in health service delivery such as industry. Broad-spread recognition of the importance of healthcare users’ input has gained so much traction that many jurisdictions have instituted mechanisms to facilitate such involvement from an individual committee level (e.g., British Columbia Patients as Partners) to a systemic level through prioritized patient-oriented research. In British Columbia (BC), Canada, citizen-patient participation in healthcare decision-making, planning and research takes many forms and occurs at varying levels (locally, regionally, provincially). For instance, the Patient Voices Network operates at a provincial level to pair patient partners with healthcare stakeholders including researchers seeking to incorporate patient perspectives into their work]. Likewise, BC’s Regional Health Authorities have responsibilities to engage citizens-patients to plan and deliver health services that satisfy population needs in their respective regions]. Engagement opportunities are unique to each Health Authority and might involve focus groups, surveys and workshops, presentations to municipal councils and community organizations, and participation on advisory committees.
What is less clear, however, is the agency of citizenspatients to be proactively involved in shaping strategic agendas as opposed to responding to health system priorities. In BC, there are few, if any, established mechanisms to proactively gather citizen-patient input for priority setting activities. A further challenge of proactivity is finding these opportunities for involvement in a healthcare system that is distributed and siloed. This is compounded by the diversity of citizen-patient voices and the danger in assuming homogeneity within this group.
British Columbia is Canada’s third largest province with a land mass of nearly 950,000 square kilometres. Despite its expansive geography, the majority of the province’s population is concentrated in urban areas that account for 5 % of the land base . Meanwhile, 13.6 % of the population is located in non-urban settings that encompass 95 % of the land area . It is unsurprising then that rural BC communities are often small and dispersed .
British Columbia’s rural residents are older than their urban counterparts and as populations age, their need for services including healthcare increases . Additionally, rural residents experience poorer socioeconomic status, including lower educational attainment, higher incidences of unemployment and lower average earnings, and poorer health status, including higher incidences of some chronic diseases, poorer perinatal health outcomes, and higher rates of all-cause mortality compared with urban dwellers. Nonetheless, low population density in rural areas in combination with the vast geographical landscape, make it difficult to sustain specialist services and hamper access to primary care.
Inclement weather, mountainous terrain, reliance on ferry schedules and a lack of land-based intra- and intercommunity public transportation options in many rural areas compound these barriers to accessing care. The organizing principle of ‘community’ in the rural context is important as isolated geographies often intensify collective culture and lead to a strong sense of identity and unity through locality. This sense of belonging in many communities, alongside the shared priorities that are location-specific (e.g., lack of local access to emergency care), give rise to the importance of recognizing community along the citizen-patient continuum. Because of this, the description of our engagement framework is citizen-patient-community (CPC).