ArticleBMC rheumatology2026
"What do you want this information for?": cognitive interviews with arthritis researchers to inform the development of a health equity-focused demographic survey for outcomes research.
Article in BMC rheumatology, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Authors and funding
13 authors.
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Abstract
backgroundArthritis research in Canada has historically lacked focus on equity, diversity, and inclusion (EDI), as studies show limited reporting of equity-related factors and underrepresentation of participants who are historically from underserved communities. To address this, the objective of this study was to gather feedback from arthritis researchers in Canada to inform the development of a health equity-focused demographic survey for arthritis outcomes research.
methodsCognitive interviews were conducted with individuals who (1) have experience conducting arthritis research; (2) reside in and/or conduct their research in Canada; and (3) speak English or French. A demographic survey developed based on the PROGRESS-Plus framework, which includes characteristics that stratify health opportunities and outcomes (Place of residence; Race, culture, ethnicity, language; Occupation; Gender, sex; Religion; Education; Socioeconomic status; Social capital; Plus), was iteratively refined through the ‘think-aloud’ technique where participants provided insights and shared perspectives. Thematic analysis was applied to interview transcripts.
resultsTwenty arthritis researchers (11 men) in Canada participated in cognitive interviews. All participants described how the health equity-focused demographic survey was perceived as a feasible and relevant tool. However, some participants expressed concern about questions that focus on perceived sensitive factors (e.g., religion, sexual orientation), while emphasizing there needs to be strong rationale for inclusion to establish patient trust. Three overarching themes were developed: (1) Purpose for collecting demographic data from a health equity lens; (2) Implications of collecting health equity information for data collection, analysis, and interpretation; and (3) Suggestions to enhance survey usability.
conclusionsA health equity-focused demographic survey developed and refined through cognitive interviews with arthritis researchers may serve as a pragmatic tool to support the integration of EDI in arthritis outcomes research.
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