The importance of lived experience in drug policy research: Being a member of the Lived Experience Advisory Group in Ontario, Canada.


Author: Charlotte Munro

Theme: Social Science & Policy Research Year: 2023

Background:
The importance of meaningful, active engagement with persons with lived experience in drug policy and harm reduction research is increasingly being recognized for helping to ensure that the perspectives of people represented in data are heard, increasing the relevance and value of research, and supporting effective dissemination of findings. We describe the approach taken to develop the Ontario Opioid Drug Observatory (OODO) Lived Experience Advisory Group (LEAG) and review lessons learned throughout the process.

Methods:
The OODO LEAG was developed in 2017, and people with lived experience with opioids were recruited from across Ontario. In order to ensure that the group is representative of Ontario’s population, individuals were selected based on a variety of experiences, demographics and geography, including representation from First Nations communities. The involvement of the LEAG takes an integrated knowledge translation approach by incorporating members at all stages of the research process.

Results:
The LEAG supports the Observatory by ensuring the relevance of drug policy and harm reduction research from the perspective of people with lived experience as these members provide interpretation and contextualization of research findings and advise on dissemination strategies, with many being involved as co-authors on publications and reports. Three lessons learned that have helped support effective collaboration are: 1) Having a consistent contact person to build relationships, trust and provide support to all members 2) Regular meetings to maintain community engagement and facilitate ongoing insight into project work, and 3) Inclusion as paid research team members on projects which recognizes their extensive expertise and value to the research project.

Conclusion:
Engaging people with lived experience throughout the research process is a feasible and effective way to ensure that drug policy research is relevant, impactful, and has clear implications for policy, the public, and future research.

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