Including Indigenous knowledge in biomedical research: a co-autoethnography

Abstract

Background: The need to improve biomedical research for the safe inclusion of Indigenous peoples is well documented. However, how one achieves this improvement, particularly in multisite, hospital-based research, is largely absent from the published literature. We aimed to conduct a reflexive dialogue to examine the challenges faced when adapting a hospital-based, biomedical acute rheumatic fever project in response to First Nations community feedback, thereby identifying possible areas for advancement in this type of research.

Methods: This study used co-autoethnography, a qualitative methodology in which multiple researchers collaboratively reflect on and analyse their personal experiences related to a shared topic. We used this approach to reflect on the challenges of incorporating Indigenous knowledges into a biomedical acute rheumatic fever project, and to explore how the project itself evolved in response to feedback from First Nations stakeholders. Aboriginal coauthors used the First Nations' Yarning method to generate data for co-autoethnography until data saturation was reached (ie, once no new challenges were identified), at which point an all-author meeting led by an Aboriginal coauthor was held to present and further reflect on the tensions that had been encountered. Briefing and debriefing sessions between Aboriginal coauthors were held before and after the all-author meeting. The resulting data were additionally analysed through a collective writing process involving multiple revision cycles and further Yarning and discussions until every coauthor was satisfied that the findings were consistent with their ideas and experiences.

Findings: 18 Yarns and meetings involving six researchers as participants were held between March, 2023, and November, 2024. Seven key challenges were encountered in honouring First Nations knowledge: barriers to community engagement; poorly suited project design; complications with biomedical funding structures; inappropriate research ethics documents; poor engagement with other biomedical research groups; the impact of the hospital setting on cultural safety; and anticipated disagreements and top-down team dynamics within the biomedical research team. We identified four major aspects of the acute rheumatic fever project that underwent adaptation in response to local First Nations stakeholder feedback: community consultation, project design, consent processes, and research team structure.

Interpretation: In responding to First Nations knowledge and wisdoms, we were able to incorporate Indigenous ways of knowing, being, and doing into an acute rheumatic fever project while simultaneously retaining the biomedical conventions necessary for a robust scientific design. However, although we adapted the project (with difficulty), we do not recommend that researchers use the same process. Our adaptations to the ill-fitting biomedical research model placed unnecessary burden on First Nations stakeholders and created lengthy delays. Instead, we propose that biomedical research systems require remodelling and innovation to ensure fitness-for-purpose and safe expansion with First Nations peoples.

Funding: National Health and Medical Research Council of Australia and National Heart Foundation of Australia.