Equity and inclusivity in research: co-creation of a digital platform with representatives of marginalized populations to enhance the involvement in research of people with limited literacy skills
Tóm tắt
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. People with limited literacy skills are often excluded from health research. Engaging patients and community members with limited literacy in research requires tailored approaches and methods that have been tried and tested with them. In 2017, building on an existing partnership between researchers well-versed in using participatory visual and sound methods and community partners, we undertook the co-creation of a digital platform. Our aim was to empower both academic researchers and community researchers and partners (lay persons, clinicians, stakeholders, community organizations) to engage in research projects with people with limited literacy skills. The result was a digital platform (
https://www.engageplus.org
) comprising several modules and resources available in French and English and accessible on the Web. In this commentary, we share our experience in co-creating this digital platform and discuss the facilitators and challenges encountered.
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