This guide is intended as an orientation tool for research teams whose objective is to strengthen the health system and improve population health through partnerships with users, patients, lived experience experts, or community-based members or organizations, known as community partners.
More specifically, this guide discusses how teams can work in partnership with persons who are socially excluded. These individuals have credible and legitimate knowledge. Their participation in research can help generate solutions and outcomes that are relevant and conducive to health equity, which is based not only on access to care and services in the health care system, but also on other social factors, such as access to housing, healthy nutrition, and education, as well as income redistribution to improve population health overall.
Authors
- Pre Christine Loignon
In collaboration with
- Kristelle Alunni-Menichini
- Caroline Leblanc
- Isabelle Wilson
- Jeannine Foisy
- ENGAGE committee
Inclusion
| I | Integrate diverse perspectives into research By integrating into our teams a representative variety of people concerned by our research — including socially excluded persons — we can gain a more complete picture of a situation through the pooling of diverse experiences, skills, and ways of thinking. |
| N | Nurture authentic and caring relationships Building a team requires, among other things, developing authentic relationships with people who are socially excluded. Caring is an important catalyst for this, as is creating spaces where each individual knows they will be respected, listened to, and supported, regardless of their opinions, ideas, or skills. |
| C | Consider the strengths, needs, and interests of all team members Considering and valuing the strengths and interests of people who are socially excluded, while taking their needs into account, helps foster their long-term involvement. Openness, flexibility, and recognition of their knowledge as accepted on the same level as other types of knowledge are therefore essential. |
| L | Look inward to counter prejudice and discrimination Recognizing and becoming aware of one’s own stereotypes (thoughts) and prejudices (feelings) stemming from beliefs and social norms instilled from an early age is an important step in avoiding discrimination (actions) that can sometimes be unconscious and can perpetuate deep inequities. |
| U | Use innovative methods to make active involvement in research possible for everyone Adapting research to the people who engage in it — rather than expecting them to adapt to the needs of the research — requires finding new ways of working to include people who might not otherwise be able to participate in research. |
| S | Support and develop each person’s skills Promoting the emancipation of socially excluded individuals by giving them the means to gain more power over their own lives and become key players in improving their health conditions and transforming health systems. |
| I | Include ongoing assessment of our participatory processes Regularly assessing our practices, as well as the needs and well-being of individuals — which may change over the course of the project — will foster effective collaboration with our community partners. |
| O | Offer personalized support to maintain engagement in research Providing educational, material, emotional and cultural support keeps people engaged in research. It’s important to tailor the support to the perspectives of the people involved, as they are in the best position to know their specific needs. |
| N | Nurture lasting relationships with community partners Nurturing meaningful and lasting relationships helps to sustain the positive impacts of community partners’ participation in research while fostering the emergence of new participatory projects. |