Building the foundation for a practice-based research network: supporting primary care research across Canada.

Context: The Strategy for Patient Oriented Research (SPOR) was designed to engage previously passive stakeholders in the research process to ensure that the most urgent health challenges are addressed with evidence-based solutions that are feasible and scalable. The Primary and Integrated Health Care Innovations Network (PIHCIN), one of multiple SPOR entities, is rooted in community-based primary health care and meant to support transformation of primary and integrated care to improve patient experiences and health. Objective: To describe key components of building the foundation for a cross-jurisdictional, practice-based research network. Design: Cross-sectional survey and PIHCI network documentation review. Setting: SPOR PIHCI networks within British Columbia; Alberta; Saskatchewan; Manitoba; Ontario; Quebec; New Brunswick; Nova Scotia; Prince Edward Island; Newfoundland and Labrador; and the Northwest Territories. Participants: Responses were received from 11 networks who completed a template asking about their governance, capacity building, stakeholder engagement and patient partners. Responses were also received from the SPOR PIHCIN Pan-Canadian Patient Council. Outcome Measures: Thematic analysis across responses and documents for key components foundational to PIHCIN: types of stakeholders engaged, types of capacity building activities, knowledge translation and exchange activities. Results: Tripartite (clinician, scientist, decision-maker) leadership was used to align more closely with provincial and territorial needs in bringing practice and research closer together. PIHCIN enabled a unique pan-Canadian forum for government staff responsible for primary care. Individual networks and the PIHCIN patient-partners were actively engaged in research and governance on all levels including leading their own research. PIHCIN built research capacity by partnering with the Transdisciplinary Understanding and Training on Research Primary Health Care (TUTOR-PHC) and embedding fellows within the network. The PIHCI network undertook two separate learning series featuring patients, policy makers and scientists that were open to the public and demonstrated clear impact. Conclusion: Foundational components of embedded patients-partners, tripartite leadership, capacity building and knowledge translation and exchange have led to the formation of the PIHCI network providing an excellent base to build a pan-Canadian practice-based research and learning platform.

Demonstrating the complexity of patient-partnered research in primary care: a snapshot of patient-partners.

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 patient-partners 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.

Establishing patient-partner priorities within the primary and integrated health care innovations network in Canada.

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 patient-partners 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.