Better Together: Launching and Nurturing a Community Stakeholder Committee to Enhance Care and Research for Asthma and COPD

Abstract

Partnering with patients and community stakeholders to identify, design, undertake, and evaluate research is increasingly common. We describe our experience with creating and developing an ongoing Community Stakeholder Committee to guide lung health research for disease prevention and health care improvement. This committee is central to the integrated knowledge translation approach of Legacy for Airway Health, which is dedicated to preventing and improving care for lung diseases. Patient Engagement in Research (PEIR) aims to improve the relevance, quality, and implementation of research activities. Meaningful patient and community engagement in research remains challenging to enact. The committee was established in October 2019, just before the COVID-19 pandemic, and quickly adapted from in-person to virtual engagement activities. This change led to an increased focus on relationship-building and mutual support alongside other research and training activities. We conducted a baseline evaluation survey after 1 year (October 2020), using a modified version of the Patient Engagement in Research Scale (PEIRS-22). Whereas individual scores suggested varied levels of meaningful engagement within the committee, overall results indicated strong personal relationships and a sense of feeling valued and respected, as well as a desire for increased opportunities to contribute to research within the program. Overall, this experience offers lessons learned about the importance of spending time and effort to build relationships, particularly in a virtual context, and shows that meaningful engagement can be achieved even when personal contact is limited. These efforts are illustrated in successful grant applications, research involvement, and stronger personal relationships.

Keywords: COPD; Community Stakeholder Committee; PEIRS-22; asthma; patient engagement; research.