Primary health care (PHC) provides holistic care to patients across the lifespan and offers a whole-society approach to health and wellbeing. PHC services are accessed by more people than any other type of healthcare in Ontario. While patient engagement in research is increasingly common, it is less common in PHC to engage patients in decision-making beyond point-of-care. Roles for patient partners in learning health systems, including PHC, can be unclear and yet patient partners desire opportunities to meaningfully contribute to these rapid cycles of learning and improvement. Facilitating patient engagement in multiple PHC domains (design, delivery, research, and education) may improve how PHC is organized at local, regional, and provincial levels, and how responsive it is to patient needs. To explore ways to integrate patient partners into future PHC systems, the study activities were structured into six stages of group concept mapping (which integrates qualitative individual and group processes with multivariate statistics to describe a topic). Our objective was to engage Canadian PHC interest holders to answer the following research question: “In what ways can patient partners support PHC design, delivery, research, and education?”. Ideas were generated by academics/researchers/health professionals n = 40; 43%, patients/caregiversn = 19; 20%, trainees n = 17; 18%, ‘other’ interest holders n = 11; 18% and policy/decision makers n = 7; 7%. Eleven patients/caregivers were engaged as partners in study planning, implementation and knowledge mobilization; eight also acted as participants in concept mapping activities. Data were collected through an in-person workshop in Ontario, CA and online. Eighty-four discrete ideas were identified, rated and sorted into a nine-cluster concept map. The most important and feasible clusters identified roles in advancing equity, informing research funding/priorities, and supporting patient partnerships. A cluster of ideas about integrating patient partners in PHC policy and governance roles was deemed important but more challenging to enact. PHC reform presents opportunities to integrate patient partners’ lived and living experiences and their expertise into health systems. Doing so will contribute to a PHC system informed by patients’ priorities, maximizing real-world impact. Patients use primary health care services more than any other type of healthcare in Ontario. Primary health care services are provided by family doctors and nurse practitioners in the community. Research about this kind of care often includes patients’ opinions of the health services that they received during appointments. Patients’ opinions have already helped to improve the quality of care they are provided, but there is still an opportunity to include them in efforts to shape how the larger system of primary health care is organized and transformed. Patient Expertise in Research Collaboration (PERC) helps researchers to partner with patients for their primary care projects. The PERC team worked with patients, researchers, policymakers, trainees, and health care providers to gather ideas about how patients can help with primary health care research, delivery, planning, and education. Diverse interest holders grouped and rated the ideas that were gathered by researchers. Each idea was rated on how important it was and how easily it could be put into action. A computer program was used to create visual maps to show how ideas were grouped and rated. The maps showed that participants in this process thought it was most important for patients to be treated as equal members of the research team. After the maps were finalized, PERC researchers and patient partners spoke about how these ideas could be actioned. The ideas that were gathered show how patients can help improve the primary health care system.
Ganann et al. (Tue,) studied this question.