A Roadmap for Developing Indigenous Patient-Reported Outcome and Experience Measures

Project Summary

Patients are often asked to complete surveys or questionnaires about their health and/or care experiences (also known as patient-reported outcome and experience measures, “PROMs” and “PREMs”).

However, many researchers and survey makers do not know how to make surveys culturally relevant to Indigenous peoples—for example, how to ask the types of questions that matter to Indigenous peoples and communities.

We sought to create pathways (a framework) for developing culturally relevant PROMs and PREMs, as well as an inventory of existing culturally relevant PROMS and PREMs, through:

A literature review: we looked at other research and published work to see what culturally relevant surveys have already been created, and understand how they were created
Interviews with researchers who are developing Indigenous-specific PROMs and PREMs, as well as community leaders interested in using these tools
Conversations with Indigenous community members about their experiences with and perspectives on health and experience surveys

Our work began by creating a video, posted on YouTube, to introduce our team and the project to potential participants. We viewed this as a form of reciprocal knowledge sharing. Rather than researchers only asking information from the participants, the research team members introduced themselves in the video in a personal way, with the goal of bringing humanity and humility to the research process.

Our research team included Indigenous advisors (one Elder and two Elders-In-Training), who used ceremony to help bring us together and work collaboratively.

Project Findings

"Pathways" framework

Our “pathways” framework included 13 protocols:

13 Protocols

Establish a study team grounded by Indigenous Peoples
Build meaningful and reciprocal relationships with Indigenous community partners; recognize the importance of speaking heart to heart
Create an “ethical space,” meaning that all parties (Indigenous and non-Indigenous) acknowledge their different cultures and worldviews, and work with each other in a respectful and shared space
Ensure ceremony and storytelling are a critical part of project from beginning to end
Identify Indigenous community-specific priorities; conduct needs assessment, literature review and environmental scan
Invite and create content with Indigenous community members, leaders, and experts
Apply an Indigenous lens and/or knowledge consistent with Indigenous worldviews to question and content development
Ensure Indigenous peoples’ knowledge are reflected in the survey tools
Validate: Ensure cultural appropriateness, acceptability, relevancy, validity, and reliability of survey questions
Ensure ethical data ownership, collection, and storage
Administer the survey using culturally appropriate methods (including in-person, or over the phone)
Analyze data using both Indigenous and western worldviews
Accountability: Ensure results are shared and used to inform changes and communicate how those changes were implemented

As stated above, our Indigenous Elder and Knowledge-Keeper team members were invaluable to this work. Among other insights, these team members demonstrated how ceremony can be included in research itself so that our research process would be both welcoming and respectful of Indigenous knowledge, and Indigenous ways of knowing. Accordingly, in our project, we also found that it is absolutely necessary to include Indigenous Elders in research involving Indigenous peoples.

Elders are frequently called upon to participate in research, yet there are not enough Elders to do the work. As such, it is important that research bodies fund positions to help build this capacity (e.g., supporting Elders-In-Training).

Presentations

March 6, 2021: Indigenous Graduate Student Symposium 2021. Shelby Loft & Tonya Smith: A Roadmap for Indigenous Patient Reported Outcome and Experience Measures.

Priorities: Advancing methods for ensuring PCM accurately reflects what is important to patients, Giving 'voice' to patient, family, caregiver, and community stories, Indigenous methodologies for Patient-Centred Measurement

This project is part of the Patient-Centred Measurement Cluster.

Team

Lori d’Agincourt-Canning, Co-lead ✉
Jenny Morgan, Co-lead ✉
Shabnam Ziabakhsh, Co-lead ✉
Elder Sharon Jinkerson-Brass, Co-lead
Soodi Joolaee
Tonya Smith
Shelby Loft
Tosh Mizzau
Natasha Anderson
Malina Dawn
Darci Rosalie
Danielle Harkey
Rochelle Lesueur
Julia Hwang