The BC SUPPORT Unit Patient Engagement Methods Cluster undertook an extensive consultation involving diverse stakeholders to identify compelling patient engagement (PE) research to support across our province. A prominent theme of that consultation was that PE in research must embrace diversity. The consultation found that, among patient partners engaged in research, certain populations were routinely underrepresented. Knowing how to identify and address the barriers that these populations face in accessing research opportunities may help research teams increase diversity and equity among the patient partners that they engage.
Furthermore, online platforms can be a convenient, cost-effective and enjoyable way to learn about health research; however, not a lot of content is co-created by researchers and patients, which is a missed opportunity to potentially improve the quality of content and promote research engagement.
Five teams, each including at least one patient partner as well as an academic researcher, were formed to create video-based educational modules to help research teams engage these underrepresented populations:
The patient partners—and, often, the academic researchers—had lived experience as members of at least one of these underrepresented communities.
A sixth team developed a module that would serve as a primer to the topic of diversity and equity in PE in research.
Teams performed environmental scans, then wrote scripts and developed storyboards. These videos are hosted on the Tapestry platform, which presents them in thematically linked webs. Once fully evaluated in 2022, they will be released to the public.
The videos offer a launching-off point to discuss diversity in PE from the perspectives of underrepresented communities. They explore the barriers to PE and some ways to overcome them, while issuing a call to action to research teams to more actively advocate for participatory equity at a systemic level. These educational modules acknowledge that they reflect some underrepresented perspectives but not all, but the Tapestry platform offers a flexible way to invite community co-creation of new resources for each module or new modules to continue the conversation into the future.
Oct 2021: Disability Politics 101 workshop, Hollyhock, virtual via Cortes Island, BC
Mar 2021: Simon Fraser University Faculty of Health Sciences research seminar “Co-creating research communications with patients”
Feb 2021: Public/Patient Engagement Community of Practice quarterly meeting: “The Tapestry Project: Tools to support equity and diversity in patient engagement in research”
Jan 2021: Invited presentation at the Health Care Systems Research Network (HCSRN) PER SIG Webinar
Oct 2020: BC SUPPORT Unit Putting Patients First Conference 2020, Connecting Face to Face in Virtual Space – Oral Presentations: Patient Engagement
Dr. Erin Michalak, Co-lead ✉︎
Dr. Steven Barnes, Co-lead
Dr. Rachelle Hole, Co-I
Dr. Iva Cheung, Co-I
Allyshia Van Tol