Equitable Patient and Public Involvement Strategies for Scaling Health and Social Care Interventions: A Consensus...

Patient and public involvement (PPI) is recognized as essential for scaling interventions in health and social services, but there are few guidelines to support it. We sought consensus on strategies for involving patients and the public in scaling in an equitable and meaningful way.

We conducted a participatory consensus study inspired by Delphi techniques. We used as a starting point 23 PPI strategies for scaling (on the involvement continuum, from providing information to full co-production) as identified in a 2024 scoping review. First, we established a steering committee, intended to include patient or public representatives, to validate the relevance of the 23 strategies for inclusion in an online survey consensus process to confirm their applicability to PPI. Second, researchers, health professionals, policymakers, and patient or public representatives completed the online survey to assess the validated strategies against four evaluation criteria: equity, comprehensiveness, adaptability and significance. We used the DELPHISTAR checklist to report results and the GRIPP2 framework to report PPI in the study.

All 23 PPI strategies were found relevant by the steering committee and proceeded to the 2-round consensus process to evaluate 92 items (23 strategies x 4 criteria). By April, 2025, 14 participants had completed the first round and nine had also completed the second. Participants included patient and public representatives (n = 5), researchers (n = 6), health professionals (n = 3) and policymakers (n = 2) mostly based in Canada (n = 10). Of 23 PPI strategies assessed, 19 achieved consensus on at least one of the four criteria. Three strategies (Service users' needs assessment, Organizational advisory groups and Co-leadership in quality and safety improvement) achieved consensus across all criteria, while four strategies did not reach consensus on any. Co-leadership in quality and safety improvement (88.3%), Co-leadership in policymaking (87.3%) and Service users' needs assessment (87.3%) achieved the highest global scores. Consensus was reached on 44/92 items, most frequently for equity. These strategies were primarily situated in the organization of health and social care and the co-production level of the involvement continuum.

The strategies prioritized by stakeholders were not necessarily the ones most frequently discussed in the literature. We recommend systematically involving patient and public representatives throughout scaling, including when choosing PPI strategies.

A patient instructor was involved in the steering committee, sharing decisions on study design, data collection instruments and dissemination of findings. Patient and public representatives also took part in the consensus process, and their feedback was considered equal to that of the other experts.