Beyond Words: A Call to Action for Language Inclusivity in Prospective Research
摘要
In the USA, individuals who prefer to speak, read, or write non-English languages at home, i.e., non-English language preference (NELP) individuals, have nearly tripled over four decades, yet < 3% of clinical trials offer translation, and ~ 19% require English proficiency. Exclusion of communities with NELP limits generalizability by reducing sample representativeness and missing language-related effect modifiers, decreases patient-centered care and outcomes, and deepens healthcare inequities and mistrust. NELP is associated with worse clinical outcomes independent of race and ethnicity, suggesting unique barriers impacting research validity and effectiveness. Identifying such barriers and interventions to participation in prospective research among communities with NELP is therefore critical. Barriers span the research lifecycle: from limited funding, translated study materials, and research team communication during the planning phase to under-reporting language in dissemination. Interventions also span the research lifecycle, empowering all key players, from study teams to policymakers, including institutions and funding agencies that support standardized education and infrastructure. This includes better capturing language preferences in electronic health records, mandating language reporting through study milestones and publication, and increasing funding mechanisms for language-inclusive research. Despite significant barriers, the scientific community has the responsibility and power to improve language inclusivity, representativeness, and generalizability of prospective research.