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ENGAGE: participatory methods and visual and auditory tools to get vulnerable populations involved in research

How can you get vulnerable people and those with low literacy levels involved in health research? How can you reduce barriers between university researchers and members of the community? Co-built by community-based organizations and members of the Canadian and international research communities, ENGAGE is a bilingual website offering participatory methods, as well as visual and auditory tools.

The ENGAGE initiative: a collaboration with the Unité de soutien

logo_engage

Between 2016 and 2020, three community-based literacy organizations involved in participatory research, Le Tour de LireAtout-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

  • Aims to support the research engagement of individuals affected by inequalities in society and in research and reduce the barriers between university researchers and members of the community.
  • Provides a wealth of information to help members of the community and individuals involved in research better grasp the foundations of participatory research.
  • Offers visual methods to promote the participation of members of the population who are often excluded from more traditional research designs.

Why?

  • Equip citizens, patients with low literacy, and a variety of health organizations that wish to develop their knowledge and skills related to participatory and visual research.
  • Sensitize and equip researchers about methods that promote engagement in research and are adapted to various types of populations to promote equity.

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.

This site was born from a desire to provide tools that will help health researchers involve individuals and communities who are silent or poorly represented in traditional research designs.

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.