Warren Mike, Leamon Toni, Hall Amanda, Twells Laurie, Street Catherine, Stordy Allan, Majumdar Kakali, Breault Lorraine, Fiest Kirsten, Rasiah Jananee, Santana Maria, Etchegary Holly
NL Support Unit, Newfoundland and Labrador, Canada.
NL Support Unit and Primary Healthcare Research Unit, Memorial University, St. John's, Newfoundland and Labrador, Canada.
J Patient Exp. 2020 Dec;7(6):898-905. doi: 10.1177/2374373520909598. Epub 2020 Mar 23.
This article describes two patient advisory councils (PACs) in Canada in order to contribute to the limited evidence base on how they might facilitate patient engagement in health research. Specifically, members of PACs from Newfoundland and Labrador and Alberta describe their councils' governance structure, primary functions, creation and composition, and recount specific research-related activities with which they have been involved. Key challenges of these councils and facilitators of their use are also presented. Finally, members from both councils recount lessons learned and offer suggestions for others interested in advisory councils as a mechanism for patient engagement in any health research project. Members believe patient engagement can result in better quality research and encourage decision makers and researchers to utilize patients' valuable input to inform health system changes and drive priorities at a policy level.
本文介绍了加拿大的两个患者咨询委员会(PACs),以补充关于它们如何促进患者参与健康研究的有限证据基础。具体而言,来自纽芬兰与拉布拉多省以及艾伯塔省的PACs成员描述了其委员会的治理结构、主要职能、创建与组成,并讲述了他们参与的具体研究相关活动。还介绍了这些委员会面临的关键挑战及其使用的促进因素。最后,两个委员会的成员都讲述了经验教训,并为那些对咨询委员会作为患者参与任何健康研究项目的一种机制感兴趣的人提供了建议。成员们认为,患者参与能够带来质量更高的研究,并鼓励决策者和研究人员利用患者的宝贵意见,为卫生系统变革提供信息,并在政策层面推动工作重点。