Patient partnership in primary health care systems of the future: a structured priority setting exercise

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/caregivers[n = 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.