Loignon Christine, Dupéré Sophie, Leblanc Caroline, Truchon Karoline, Bouchard Amélie, Arsenault Johanne, Pinheiro Carvalho Julia, Boudreault-Fournier Alexandrine, Marcotte Sylvain Aimé
Department of Family and Emergency Medicine, Faculty of Medicine and Health Sciences, Université de Sherbrooke, Longueuil, QC, Canada.
Department of Anthropology, University of Victoria, Victoria, BC, Canada.
Res Involv Engagem. 2021 Oct 5;7(1):70. doi: 10.1186/s40900-021-00313-x.
To improve health equity, as well as equity in research, community-engaged research and participatory research needs to be inclusive. Equity in health research refers to the principle that anyone affected by research or who can benefit from its outcomes should have equal opportunities to contribute to it. Many researchers advocate the importance of promoting equity in research and engage in processes that foster the research involvement of lay persons, patients, and community members who are otherwise "absent" or "silent". Still, people with limited literacy skills who experience unwarranted structural barriers to healthcare access have little involvement in research. Low literacy is a major barrier to equity in health research. Yet there exist approaches and methods that promote the engagement in research of people with literacy challenges. Building on our previous research projects conducted with community members using participatory visual and sound methods (participatory mapping, photovoice, digital storytelling, etc.), we embarked on the co-creation of a digital platform in 2017. Our aim in this commentary is to report on this co-creation experience that was based on a social justice-oriented partnership. The development of the online platform was overseen by a steering committee made up of workers from community organizations involved with people with limited literacy skills, students, and researchers. In the development process, the co-creation steps included a literature review, informal interviews with key informants, and discussion and writing sessions about format and content. After numerous challenges raised and addressed during co-creation, the Engage digital platform for engagement in research went live in the winter of 2020. This platform presents, on an equal footing, approaches and methods from academic research as well as from the literacy education community engaged with people with limited literacy skills.
为了改善健康公平以及研究中的公平，社区参与研究和参与式研究需要具有包容性。健康研究中的公平是指这样一个原则，即任何受研究影响或能从其成果中受益的人都应有平等机会为研究做出贡献。许多研究人员倡导在研究中促进公平的重要性，并参与一些过程，以促进非专业人士、患者和社区成员参与研究，否则这些人会“缺席”或“沉默”。然而，那些识字技能有限且在获得医疗保健方面面临不必要结构障碍的人很少参与研究。低识字率是健康研究公平的一个主要障碍。然而，存在一些方法可以促进有识字困难的人参与研究。基于我们之前与社区成员使用参与式视觉和声音方法（参与式绘图、照片之声、数字故事等）开展的研究项目，我们于2017年开始共同创建一个数字平台。我们撰写这篇评论的目的是报告基于社会正义导向伙伴关系的这一共同创建经历。在线平台的开发由一个指导委员会监督，该委员会由与识字技能有限的人打交道的社区组织工作人员、学生和研究人员组成。在开发过程中，共同创建步骤包括文献综述、对关键信息提供者的非正式访谈，以及关于形式和内容的讨论与写作环节。在共同创建过程中提出并解决了众多挑战之后，用于参与研究的“参与”数字平台于2020年冬季上线。这个平台平等展示了学术研究以及与识字技能有限的人打交道的识字教育社区的方法和手段。
