Addressing the need for Indigenous-specific PROMs and PREMS: A focus on methodology.

PURPOSE: Differences in Indigenous worldviews, practices and values highlight the need for Indigenous-specific health quality indicators, such as patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The purpose of this paper is to present our methodology, as part of a larger study that sought to develop a framework for creating Indigenous-specific PROMs and PREMs. METHODS: The research design was informed by Indigenous research methodology and a community-based participatory approach. It had three core components: (1) a literature exploration of existing Indigenous-specific PROMs and PREMs; (2) interviews with researchers with expertise in PROMs and PREMs developed for Indigenous populations and community leaders interested in using these Indigenous-informed evaluation tools; and (3) conversations with Indigenous community members about their experiences with health surveys. Interviews were audio-recorded and transcribed verbatim; transcripts were analyzed qualitatively using an inductive and deductive approach. Themes and sub-themes were identified to build a framework that honours Indigenous knowledges and ways of knowing. Results were validated with select research participants and the Project Advisory Committee. RESULTS: Findings demonstrate how relationship building is the necessary starting point for engagement when developing survey instruments with Indigenous peoples. Engagement requires respectful collaboration through all stages of the project from determining what questions are asked to how the information will be collected, interpreted, and managed. A relational stance requires responsibility to Indigenous communities and peoples that goes beyond research carried out using a western scientific lens. It means ensuring that the project is beneficial to the community and framing questions based on Indigenous knowledge, worldviews, and community involvement. CONCLUSIONS: This study employed a collaborative, participatory qualitative approach to develop a framework for creating PROMs and PREMs with Indigenous peoples. The methods described offer concrete examples of strategies that can be employed to support relationship-building and collaboration when developing Indigenous-specific survey instruments.

Pathways: A guide for developing culturally safe and appropriate patient-reported outcome (PROMs) and experience measures (PREMs) with Indigenous peoples.

BACKGROUND: Members of the Indigenous Health Program, BC Children's and Women's Hospitals and the University of British Columbia embarked on a joint project to describe best practices to support the creation of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) with Indigenous peoples. METHODS: The project involved a review of previous research on patient-reported measures (surveys) that had been specifically developed for Indigenous populations. It also involved interviews with key stakeholders-Indigenous and non-Indigenous academic researchers, and Indigenous community leaders and community members. Themes from the interviews and the literature review were combined and synthesized into pathways/a framework for survey development. RESULTS: The pathways document consisted of 13 protocols and associated teachings for guiding processes and framing survey questions. These encompassed building relationships, community engagement and consultation, benefits to community, ceremony and storytelling, two-way learning, participatory content development, governance and accountability. Findings emphasized the criticality of Indigenous leadership in setting priorities for PROMs and PREMS and establishing relationships that honour Indigenous experiences through all phases of a study. Assessment of the framework's validity with select research participants and the Project Advisory Committee was positive. CONCLUSION: This is the first framework to guide development of PROMs and PREMs with Indigenous peoples and communities. It addresess both process and outcome and includes concrete steps that collaborators can take when establishing a partnership that is respectful and inclusive of Indigenous ways of knowing and being.