Patient engagement in the SPOR Evidence Alliance: Reflection and learnings
Linda C. Li,
Alison M. Hoens,
Linda Wilhelm,
Vikram Bubber,
Elliot PausJenssen,
Annette McKinnon,
Jenny Leese,
Thalia Otamendi,
Clayon B. Hamilton,
Wasifa Zarin,
Andrea C. Tricco
Affiliations
Linda C. Li
Department of Physical Therapy, University of British Columbia, 2177 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada
Alison M. Hoens
Department of Physical Therapy, University of British Columbia, 2177 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada
Linda Wilhelm
Canadian Arthritis Patient Alliance, Canada
Vikram Bubber
Patient Voices Network, 201–750 Pender St W, Vancouver, BC V6C 2T8, Canada
Elliot PausJenssen
Saskatoon Council on Aging, 2020 College Dr, Saskatoon, SK S7N 2W4, Canada
Annette McKinnon
Arthritis Patient Advisory Board of Arthritis Research Canada, 2238 Yukon Street, Vancouver, BC V5Y 3P2, Canada
Jenny Leese
Arthritis Research Canada, 230 - 2238 Yukon Street, Vancouver, BC V5Y 3P2, Canada
Thalia Otamendi
Department of Physical Therapy, University of British Columbia, 2177 Wesbrook Mall, Vancouver, BC V6T 1Z3, Canada
Clayon B. Hamilton
Department of Evaluation and Research Services, Fraser Health Authority, 13450 – 102nd Avenue, Surrey, BC V3T 0H1, Canada
Wasifa Zarin
Knowledge Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, 209 Victoria Street, East Building, Toronto, ON M5B 1T8, Canada
Andrea C. Tricco
Knowledge Translation Program, Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Unity Health Toronto, 209 Victoria Street, East Building, Toronto, ON M5B 1T8, Canada
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.
