People With Lived Experience at the Centre of Canadian Stroke Best Practice Recommendations: A Model for Guideline Developers

M Patrice Lindsay; Natalie Gierman; Jocelyn E Harris; Gavin Arthur; Moira E Teed; Anita Mountain; Gordon Gubitz; Eric E Smith; Dar Dowlatshahi; Andrea de Jong; Leigh C P Botly

doi:10.1177/2374373520956538

People With Lived Experience at the Centre of Canadian Stroke Best Practice Recommendations: A Model for Guideline Developers

J Patient Exp. 2020 Dec;7(6):951-956. doi: 10.1177/2374373520956538. Epub 2020 Sep 10.

Authors

Affiliations

¹ Heart and Stroke Foundation of Canada, Toronto, Ontario, Canada.
² School of Rehabilitation Science, McMaster University, Institute for Applied Health Sciences, Hamilton, Ontario, Canada.
³ Division of Physical Rehabilitation Medicine, Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
⁴ Division of Neurology, Department of Medicine, Dalhousie University, Halifax, Nova Scotia, Canada.
⁵ Department of Clinical Neurosciences, University of Calgary, Calgary, Alberta, Canada.
⁶ Division of Neurology, Department of Medicine, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.

Abstract

Actively engaging people with lived experience (PWLE) in stroke-related clinical practice guideline development has not been effectively implemented. This pilot project evaluated the feasibility, perceived value, and effectiveness of the Community Consultation and Review Panel (CCRP), a new model to engage PWLE in the writing and review of Canadian Stroke Best Practice Recommendations. Responses to a standardized evaluation tool indicated that participants perceived the CCRP as valued, impactful, effective, and beneficial to stroke care. This project successfully demonstrated that values, experiences, and recommendations of PWLE can be effectively incorporated into guideline content and is applicable to all guideline development processes.

Keywords: clinical practice guidelines; patient engagement; people with lived experience; perceptions of care; person-centered care; rehabilitation; stroke; transitions of care.