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:
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.
Our “pathways” framework included 13 protocols:
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).
A video summarizing our study findings is currently under development.