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

Area of Science:

• Health Services Research
• Indigenous Health
• Qualitative Research Methodology

Background:

• Indigenous worldviews necessitate tailored health quality indicators, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs).
• Existing health survey instruments often fail to incorporate Indigenous perspectives, highlighting a gap in culturally relevant evaluation tools.

Purpose of the Study:

• To present a methodology for developing a framework to create Indigenous-specific PROMs and PREMs.
• To outline strategies for respectful engagement and collaboration with Indigenous communities in health research.

Main Methods:

• A community-based participatory research design informed by Indigenous research methodology.
• Three core components: literature review of existing Indigenous PROMs/PREMs, interviews with experts and community leaders, and discussions with Indigenous community members.
• Qualitative analysis of transcribed interviews using inductive and deductive approaches to identify themes and build a framework.

Main Results:

• Relationship building is foundational for effective engagement when developing survey instruments with Indigenous peoples.
• Respectful collaboration is essential throughout all project stages, from question design to data interpretation.
• A relational stance emphasizes responsibility to Indigenous communities, ensuring projects are beneficial and incorporate Indigenous knowledge.

Conclusions:

• A collaborative, participatory qualitative approach was used to develop a framework for Indigenous-specific PROMs and PREMs.
• The described methods provide practical strategies for fostering relationship-building and collaboration in developing culturally relevant health survey instruments.