Reducing research participant disparities through use of a co-developed video intervention: A cohort nested pre-post study

Abstract

Background Evidence on effective approaches for the recruitment of diverse populations remains limited. This study aimed to assess whether a co-developed study information video would improve participant ethnic diversity within a paediatric study cohort. Methods Pre-post study nested within the Uveitis in childhood prospective national inception cohort study, UNICORNS. Intervention of interest: study information and recruitment video with format and content co-developed with a patient expert group. Outcome of interest: the proportion of families from ethnic minority groups, and of families with primary caregivers without a higher educational degree who were recruited to the study, and the proportion of families who engaged in study activities (returned patient reported outcome metrics following recruitment) pre and post intervention implementation. Results During the study period, 191 children were recruited to UNICORNS (110 pre-intervention era, 81 post-intervention era). A larger proportion of families recruited in the post-intervention era were of an ethnic minority background (36% versus 20%, Fisher’s exact test p=0.02). A larger proportion of families returned self-descriptions of their sociodemographic background (100% versus 87%, Fisher’s exact test p=0.0003) and a larger proportion returned study specific patient reported outcome measures (70% versus 55%, Fisher’s exact test p=0.003). Conclusion Co-created digital research information resources can be an effective tool for ensuring better representation in research studies and may also support participant engagement overall. Our reported methods and findings should support other researchers in developing patient-centred and patient co-developed strategies and tools for the purposes of equitable access to medical research.