Engaging Women With Lived Experience: A Novel Cross-Canada Approach

J Patient Exp. 2021 Apr 13;8:23743735211008300. doi: 10.1177/23743735211008300. eCollection 2021.

Abstract

Women with heart disease, stroke, and vascular cognitive impairment (VCI) experience gender inequities across the health care continuum. The Heart and Stroke Foundation of Canada conducted needs assessment to inform its approach in addressing health inequities experienced by women with heart disease, stroke, and VCI across the continuum of care. Although specific input is confidential, this article outlines the engagement methods used and the evaluation results. The 3-stage engagement process consisted of an internal content review, 18 in-person discussion groups via a cross-Canada tour, 14 expert interviews, and a collaboration session. In total, 204 and 57 participants were recruited for the cross-Canada tour and collaboration session, respectively. Using the Public and Patient Engagement Evaluation Tool, participants scored the engagement processes positively and found participation to be a valuable use of their time. This undertaking highlighted aspects to consider when engaging people with lived experience and how engagement can support the recovery journey. Insights presented throughout this article can help inform future research that seeks to engage stakeholders at a national level.

Keywords: continuum of care; gender equity; health advocacy; heart disease; patient engagement; patient experience; stroke; vascular cognitive impairment.