The ENGAGE initiative: a collaboration with the Unité de soutien
Between 2016 and 2020, three community-based literacy organizations involved in participatory research, Le Tour de Lire, Atout-Lire and La Jarnigoine, joined forces with researchers to create a community-engaged research partnership. ENGAGE was supported by experts in methodological development and public patient partnerships of the Unité de Soutien SRAP du Québec and the faculty of medicine and health sciences of the Université de Sherbrooke. Dr. Loignon is the science co-manager of the Patient-Public Partnership branch for RUISSS Sherbrooke. This branch is an integral part of the Patient-Public Partnership component of the Unité de soutien SRAP du Québec.
Social transformation for equity in research
What?
After reviewing the literature, creating a committee (three researchers, two fieldworkers and two students) and conducting interviews with researchers and organizations, a website was born. engageplus.org/
This site
- A pour objectif de soutenir l’engagement en recherche des personnes qui vivent de l’exclusion sociale dans la société et en recherche et réduire les barrières entre la recherche universitaire et les membres de la communauté.
- Est une mine d’informations qui peuvent permettent aux membres de la communauté et aux personnes oeuvrant en recherche de mieux saisir les fondements de la recherche participative.
- Propose des méthodes visuelles qui peuvent favoriser la participation des populations qui sont souvent exclues des devis de recherche plus traditionnels.
Why?
- Outiller les citoyennes et citoyens ainsi que les patientes et patients ayant un faible niveau de littératie de même que les organisations diverses œuvrant en santé qui souhaitent développer leurs connaissances et les habiletés en lien avec la recherche participative visuelle.
- Sensibiliser et outiller les chercheuses et chercheurs aux méthodes d’engagement en recherche adaptées aux différents types de populations pour favoriser l’équité.
Who is it for?
Anyone who would like to get individuals with low literacy involved in research.
This partnership aims to support the research engagement of individuals and communities affected by social inequalities, precariousness or poverty, social exclusion, and low literacy to better anchor research in their needs and realities.
Ce site est né d’une volonté, de mettre à la disposition aux chercheuses et chercheurs de la santé des outils qui viendront les aider à impliquer des personnes et des communautés qui sont silencieuses ou faiblement représentées dans les devis de recherche traditionnels.
The team behind ENGAGE observed that such people are underrepresented or sometimes instrumentalized in traditional study designs and patient-oriented research. As such, they co-developed an easy-to-access tool that offers approaches, methods, resources and tools to encourage their active participation in research.
Innovative participatory and visual methods.
More specifically, the ENGAGE website was designed for anyone who is interested in using visual methods to encourage engagement in participatory research. It is designed to equip members of the public, patients with low literacy, and various health organizations with knowledge and skills related to participatory and visual research.
Participatory and visual methods are part of an emerging, innovative research methodology that promotes partner participation. These methods offer several advantages that are described in detail on the website, such as helping individuals communicate and reflect on subjects that are sensitive or difficult to put into words. They also provide pespective on aspects of participants’ daily lives that may not be effectively revealed through other research methods (as these may require higher levels of literacy).
A co-building exercise
In the development of the project and co-creation of the website, various preliminary steps were completed before the tool went live. To start, we established a working committee consisting of researchers, fieldworkers and students. We then completed a literature review on the use of visual methods with at-risk populations and individuals with low literacy. We reviewed similar websites and interviewed various stakeholders (patients, researchers and community group social workers) to collect their perspectives on issues in participatory research (in particular, the various existing participatory methods), on their contents, presentation, and dissemination methods for this digital platform.
After two years of confronting the challenges this type of co-building project entails (communications issues, availability, sharing of expertise, etc.) the ENGAGE digital platform went live in winter 2020. An article was published on the co-building of the project on BioMed Central.