Setting the Foundation through Community Consultations

Increasingly, the value of meaningful collaboration with people with lived experience (PWLE) of inequities is being recognized by health services researchers and funding bodies. In health care, this is referred to as patient engagement (PE), which we have renamed as participant engagement (ParE). No universally accepted PE/ParE framework exists, and participation often excludes structurally marginalized populations despite the high prevalence of chronic disease in these communities. As a particularly stigmatized and misunderstood health condition, chronic pain yields unique insights into the importance and impact of meaningful ParE.

The purpose of the community consultations is to elicit input from communities or groups representing marginalized groups, both within health care and within broader social about their preferred approaches to “patient” engagement (including language use). We will learn collaboratively and carefully how to engage people with lived experience of chronic pain and marginalization (PWLECPM), establish when to engage PWLECPM, and where to engage PWLECPM. We will develop approaches to engagement that reflect the diversity of PWLECPM in terms of their comfort levels, needs, and interests.

The community consultations will establish the groundwork for the establishment of the Partnership for Engagement of People in Chronic Pain Research (PEPR) Research Hub.