Research 101 : A Manifesto for Ethical Research in the Downtown Eastside

A codevelopment process to advance methods for the use of patient‐reported outcome measures and patient‐reported experience measures with people who are homeless and experience chronic illness

“…One way in which we built this relationship was to encourage authentic sharing by all group members, especially from the research team, to disrupt traditional power dynamics embedded in research relationships. 27,28 This practice aligns with recommendations that researchers approach community members with the willingness to share about themselves and their own positionality, with the same openness being asked of community partners. 20,27 Another important process was beginning with reflexivity, defining our own identities and experiences.…”

“…27,28 This practice aligns with recommendations that researchers approach community members with the willingness to share about themselves and their own positionality, with the same openness being asked of community partners. 20,27 Another important process was beginning with reflexivity, defining our own identities and experiences. 20 For example, D. J. S. introduced themselves by presenting their own positioning, explaining where they came from, how they saw themselves and who they were in the context of the world around them.…”

“…29,31 By including one team member with lived experience of homelessness and chronic illness (K. W.) and one researcher (E. D.) in this initial stage of analysis, K. W. and E. D. benefitted from each other's insight while reinforcing reflexivity that investigated and challenged both researcher privilege and the potential projection of personal experience on findings. 27,32 This inclusion of a perspective of lived experience in the initial stages of our analysis allowed for more meaningful comparisons and a more complete understanding of findings. As we explored the differences in our interpretations of the advisory committee process, we came to recognize how our personal frames of reference exposed the tensions that emerged from the measurement of multiple perspectives and priorities across different levels of health care.…”

“…The committee co-chairs originally planned to reach out to patient advisory groups from inner-city organizations and extend open invitations to join the committee, 27 but just as they were starting, the COVID-19 pandemic hit North America. For a community already facing rampant social inequity, COVID-19 compounded existing crisis conditions.…”

“…Committee members with lived experience were compensated $25 per hour for their time and expertise. 27 Taking direction from Boilevin and colleagues 27 on conducting ethical research with vulnerable populations, the research team intentionally built in time to develop the trust necessary for this experiential exploration. One way in which we built this relationship was to encourage authentic sharing by all group members, especially from the research team, to disrupt traditional power dynamics embedded in research relationships.…”