Lived Experience

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The Ontario Opioid Drug Observatory has taken a proactive, patient-centered approach since its launch in late 2017 through the development of the Lived Experience Advisory Group (LEAG). Individuals with experience with opioids meet bimonthly to discuss current projects and provide high-level input on opioid-related research priorities. There are also many opportunities to participate as study team members on particular projects of interest.

Members of the LEAG:

  • Ensure the relevance of opioid-related research from a person with lived experience perspective.
  • Provide feedback on initial research findings and their potential impact on persons with lived experience.
  • Advise on dissemination strategies for opioid-related research through personal and professional networks.

Steering Committee Members

To ensure lived experience perspectives and the general public research lens is represented in OODO leadership and strategic planning, members of the LEAG, as well as two members of the ODPRN Citizens’ Panel, are included in the OODO Steering Committee.


Most of our opioid-related research projects have lived experience members involved as a research team member.

The Opioid Chapters: A Joint ODPRN and Healthy Debate Project

The Opioid Chapters features 11 stories of people whose lives have been profoundly affected by opioids. A joint project of the ODPRN and the website Healthy Debate, this multimedia online series features powerful first-person narratives from people who take opioids for chronic pain, those with an opioid use disorder, and providers who work with both.

Released September 6, 2018.

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Like being put on an ice floe and shoved away

Prior to conducting any research within the Observatory, the ODPRN convened focus groups comprised of individuals with experience using opioids in order to gather their perspectives on the current trends in opioid prescribing, utilization, and changing access in Ontario. The information gathered was used to understand the priorities of people with lived experience and the potential opportunities for research aligned within these priorities.

We convened 8 focus groups, totaling 48 participants in Toronto, Kingston, Ottawa, and via teleconference for those residing outside of city centers. We spoke with individuals who use opioids to treat chronic pain as well as those with opioid use disorder. The findings have been summarized into a publication entitled “Like being put on an ice floe and shoved away”: A qualitative study of the impacts of opioid-related policy changes on people who take opioids.


Please note that this report is NOT COMPLETE and is still in progress. Click below if you would like to continue.