“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

Abstract Background Arthritis 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. Methods Cognitive 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. Results Twenty 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. Conclusions A 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.