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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

The co-construction of the ENGAGE digital platform, a project supported by the Unité de soutien SSA Québec, was the subject of a scientific article.

The co-construction of the ENGAGE digital platform, a project supported by the Unité de soutien SSA Québec, was the subject of a scientific article.

Authors

  • Christine Loignon
  • Sophie Dupéré
  • Caroline Leblanc
  • Karoline Truchon
  • Amélie Bouchard
  • Johanne Arsenault
  • Julia Pinheiro Carvalho
  • Alexandrine Boudreault-Fournier
  • Sylvain Aimé Marcotte

The following excerpts are taken verbatim from the article published on BioMed Central.

Summary

« 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. »

Conclusion

« Co-creation of the Engage digital platform for engagement in research was intended to fill a gap in practical tools and resources to address the challenges of engaging people with limited literacy skills in research.

The platform includes tutorials on participatory visual and sound methods and modules on approaches and facilitation methods that are known to promote the inclusion and diversity of patients’ and community members’ engagement in research. We envision that the platform will continue to be enhanced and that a peer review committee including community members will evaluate proposals from researchers and the public who wish to contribute stories, modules, etc. It would be advisable for the digital platform or a portion of it to be adapted for direct online access by people with limited literacy skills. »