Patient engagement in the SPOR Evidence Alliance: Reflection and learnings
Linda Li, Alison M. Hoens, Linda Wilhelm, Vikram Bubber, Elliot PausJenssen, Annette McKinnon, Jenny Leese, Thalia Otamendi, Clayon B. Hamilton, Wasifa Zarin, Andrea C. Tricco, for the SPOR Evidence Alliance
Abstract
The Evidence Alliance (EA) is a Canada-wide multi-stakeholder organization providing national-level support in knowledge synthesis, clinical practice guidelines development, and knowledge translation. With a mandate to deliver the best available evidence to inform health policy and improve patient care, the EA involves patients and their caregivers in its governance, research priority setting and conduct, and capacity building. To reflect on the experiences of patient involvement in its first three years, the organization conducted a self-study with 17 actively involved patient partners. They answered the Patient Engagement in Research Scale 22-item short form (PEIRS-22) and open-ended questions. Of the 15 respondents, 12 were women with a mean age of 62.6 years (SD 10.1). The mean PEIRS-22 score was 82.1 (SD 15.9), indicating perceived meaningful engagement. Analysis of the free-text answers identified three themes: ( i) communication: successes, changes, and improvements; ( ii) a respectful and welcoming environment; and ( iii) opportunities to learn and contribute. Patient partners noted the EA made genuine efforts to welcome them and value their contributions. They also identified a need for the organization to increase patient partner diversity. This self-study was perceived as rewarding as it provided a foundation for further growth in patient involvement within the organization.