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

• Published in: Journal of evaluation in clinical practice 2024-04, Vol.30 (3), p.418-428
• Main Authors: d'Agincourt‐Canning, Lori, Ziabakhsh, Shabnam, Morgan, Jenny, Jinkerson‐Brass, Elder Sharon, Joolaee, Soudabeh, Smith, Tonya, Loft, Shelby, Rosalie, Darci
• Format: Article
• Language: English
• Subjects: Clinical outcomes; health service evaluation; Indigenous peoples; Native North Americans; Native peoples; Patient satisfaction; patient‐reported experience measures; patient‐reported outcome measures; Quality of care
• ISSN: 1356-1294; 1365-2753
• DOI: 10.1111/jep.13947

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.