Stories have the power to shape understanding of community sustainability. Yet in places on the periphery of capitalist systems, such as rural and resource-based regions, this power can be used to impose top–down narratives on to local residents. Academic research often reinforces these processes by telling damage-centric narratives that portray communities as depleted and broken, which perpetuates power imbalances between academia and community members, while disempowering local voices. This article explores the potential of storytelling as a means for local actors to challenge top–down notions of rural sustainability, drawing on a community-based research initiative on the Great Northern Peninsula (GNP) of Newfoundland. Five of the authors are community change-makers and one is an academic researcher. We challenge deficiencies-based narratives told about rural Newfoundland and Labrador, in which the GNP is often characterised by a narrow set of socio-economic indicators that overlook the region’s many tangible and intangible assets. Grounded in a participatory asset mapping and storytelling process, a ‘deep story’ of regional sustainability based on community members’ voices contrasts narratives of decline with stories of hope, and shares community renewal initiatives told by the dynamic individuals leading them. This article contributes to regional development efforts on the GNP, scholarship on sustainability in rural and remote communities, and efforts to realise alternative forms of university-community engagement that centre community members’ voices and support self-determination.
Background: In Canada, we are still struggling to achieve the critical goal of enabling performant health care systems that moves research results to real-world impact particularly for primary care. To address this, we have created a primary care research network where patient partners are involved in all levels of decision making for governance, research, and innovation. For many researchers, however, it is unclear what primary care patient-partners 'brings to the table.' As the Pan-Canadian Patient Council of the Primary and Integrated Health Care Innovations Network, we wanted to provide insight into the richness of expertise and experience patient partners contribute.Objectives: To provide an example of the characteristics, history and lived experience that patientpartners in a primary care research network represent and demonstrate the resource this presents.Methods: As current council members, representing 10 provinces, we developed a survey of our demographics, personal history and experience in patient-oriented research using iterative, collaborative meetings. The answers to the questions provided "snapshots" for each of us. As a group, we worked with researchers to descriptively and thematically analyze the responses to provide insight and a description of primary care research patient partners.Results: With 2 men and 8 women, we represented an average of 42.5 years of experience with health conditions (range 10-84 years) including cancer, genetic conditions, and multiple chronic diseases. On average, we worked with 4.7 different organizations each (range 2-9) on research topics covering the spectrum of primary care. Many of us acted as mentors for researchers and trainees. All of us were innovators and influencers with demonstrated leadership skills. A need for more diversity in terms of age and underrepresented minorities was noted.Conclusion: Diversity of life experience, extensive exposure to the health care system and strong engagement with multiple organizations for primary care research characterized us as patient-partners. This lived expertise represents a significant asset for researchers. This work should encourage researchers to starting thinking about how to include primary care patient-partners as a crucial resource in health research.
Background: Many experienced primary care researchers have seen the benefits of meaningful engagement with patients and community members in their research, elevating them to a research partner status. The research questions and agendas, however, are often initiated and determined by the researchers. Increasingly, research teams, organizations and networks actively engage with patientpartners to better understand what their research priorities would look like, bringing patient-partners into the research process much earlier. Among many other initiatives within the Strategy for Patient Oriented Research program, a Primary and Integrated Health Care Innovations Network (PIHCIN) was established in Canada, which includes 11 geographically distributed research networks. As part of PIHCIN, a Pan-Canadian Patient Council (the Council) was established with representatives from each provincial site. To ensure their voices were being heard, the Council decided to establish their own research priorities for consideration by the PIHCI network.Objective: To establish patient-partner priorities in the Canadian primary health care context Methods: The main goal of the Council was to submit research priorities to identify what was important from a patient-partner perspective. Through consensus building and prioritization voting, the Council developed and presented a draft of their research priorities to the PIHCI Network Leadership Council. In a second step, the Council decided that the process was missing from the document. Subsequently, with the use of the SMART goal framework, the Council engaged in a process to establish how research priorities could be accomplished. Results:The initial research priorities comprised 11 items, including priorities concerning patient's access to data, integrated health teams, patient initiated collaborative research, virtual care, broader definition of health, etc. The initial priorities eventually evolved into a set of principles, strategic operating goals, and finalized research priorities. Conclusion: Through an iterative process, the Council was able to lead, initiate and differentiate strategic operating goals from the research priorities. This process and results can provide insight for developing critical input from patient-partners for primary health care research.
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