Our findings suggest that citizen participants are highly critical of, and discerning about,their public participation experiences. Yet, they are optimistic and determined to contribute in meaningful ways to future public policy processes. They are clear about where improvements are needed and give top priority to what information is shared, and how, among participants and decision-makers. The views of experienced citizens mapped well onto most of the prior principles of public involvement with a few modifications. First, participants gave greater emphasis to the content and balance of information for the purposes of building trust and credibility between citizens and decision-makers. Second, participants viewed themselves, as well as decision-makers, as sources of information to be shared through the consultation process. Finally, participants stressed the importance of getting the information and communication principles right over addressing all other principles.

The COVID-19 pandemic has tested the resilience of health systems broadly and primary care (PC) specifically. This paper begins by distinguishing the technical and political aspects of resilience and then draws on a documentary analysis and qualitative interviews with health system and PC stakeholders to examine competing resilience-focused responses to the pandemic in Alberta, Canada. We describe the pre-existing linkages between the province' s central service delivery agency and its independent PC clinics. Together, these central and independent elements make up Alberta' s broader health system, with the focus of this paper being on PC' s particular vision of how resilience ought to be achieved. We describe two specific, pandemic-affected areas of activity by showing how competing visions of resilience emerged in the central service delivery agency and independent PC responses as they met at the system' s points of linkage. At the first point of linkage, we describe the centralized activation of an incident management system and the replies made by independent PC stakeholders. At the second point of linkage, we describe central efforts to disseminate infection prevention and control guidance to PC clinics and the improvisational efforts of staff at those independent clinics to operationalize the guidance and ensure continuity of operations. We identify gaps between the resilience visions of the central agency and independent PC, drawing broadly applicable policy lessons for improving responses in present and future public health emergencies. Finding ways to include PC in centralized resilience policy planning is a priority.

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ObjectivesTo examine the sociodemographic characteristics, activities, motivations, experiences, skills and challenges of patient partners working across multiple health system settings in Canada.DesignOnline cross-sectional survey of self-identified patient partners.SettingPatient partners in multiple jurisdictions and health system organisations.Participants603 patient partners who had drawn on their experiences with the health system as a patient, family member or informal caregiver to try to improve it in some way, through their involvement in the activities of a group, organisation or government.ResultsSurvey respondents predominantly identified as female (76.6%), white (84%) and university educated (70.2%) but were a heterogeneous group in the scope (activities and organisations), intensity (number of hours) and longevity (number of years) of their role. Primary motivations for becoming a patient partner were the desire to improve the health system based on either a negative (36.2%) or positive (23.3%) experience. Respondents reported feeling enthusiastic (83.6%), valued (76.9%) and needed (63.3%) always or most of the time; just under half felt they had always or often been adequately compensated in their role. Knowledge of the health system and the organisation they partner with are key skills needed. Two-thirds faced barriers in their role with over half identifying power imbalances. Less than half were able to see how their input was reflected in decisions or changes always or most of the time, and 40.3% had thought about quitting.ConclusionsThis survey is the first of its kind to examine at a population level, the characteristics, experiences and dynamics of a large sample of self-identified patient partners. Patient partners in this sample are a sociodemographically homogenous group, yet heterogeneous in the scope, intensity and longevity of roles. Our findings provide key insights at a critical time, to inform the future of patient partnership in health systems.

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