Listening & Learning Sessions with Indigenous Leaders
Some trials are designed specifically with and for Indigenous communities. They’re grounded in community priorities, Indigenous governance, and Indigenous ways of knowing. Those trials have very particular considerations; we are not addressing those below.
What we are focusing on, on this page, is a different group of trials: large randomized trials that enroll people with a certain health condition from many sites — across cities, provinces, and sometimes across countries. In such trials, only a small proportion of participants, say less than five percent, identify as Indigenous.
Even when the numbers are small, it still really matters how we involve Indigenous participants, how we handle their data, and how we think about benefit, trust, and fairness.
When designing and running trials, trial leaders should aim to:
- Generate new knowledge that actually improves care.
- Contribute to helping earn and build trust, especially given the history of harms and abuses in health care and research that have understandably created deep mistrust among Indigenous peoples.
- Promote fairness, so that when they say, ‘this treatment works,’ those conclusions are based on evidence that includes Indigenous peoples, if those treatments are going to be used on Indigenous peoples.
We believe that fairness includes having effect estimates that actually reflect all types of participants including Indigenous participants, so that everyone can see themselves in the evidence and feel more comfortable that the results are legitimate and relevant to them.
We acknowledge that trying to ‘do better’ in the shadow of colonization, racism, and ongoing injustice can feel heavy. It can be hard to know where to start, or whether the steps we’re taking are enough or even helpful.
On top of that, many pragmatic trials lack a commercial sponsor, and trial teams often work with limited resources. That doesn’t remove our responsibilities, but it does shape what is realistic and what we need to prioritize.
Thoughts Around Strengthening Meaningful Engagement with Indigenous Communities
In the document below, we outline several concrete steps we have implemented in our pragmatic trials training program. We do not present these as a definitive model, but rather as practical starting points for teams seeking to strengthen respectful engagement with Indigenous communities:
Explore the full series below
As part of our commitment to listening to and learning with Indigenous Knowledge Keepers, we organized a series of talks featuring Indigenous leaders in relational research, health care, data governance, and more. These sessions provided our learners with an opportunity to deepen their understanding of how Indigenous perspectives and cultural practices can be meaningfully incorporated into pragmatic clinical trials.
We invite you to explore the recordings of our sessions below.
