Enhancing registry impact: Translating registry outputs into C onsumer- F riendly I nformation (CoFI project) through consumer co-design

Abstract

Background: Registries monitor treatment pathways and outcomes, driving healthcare improvements. However, registry outputs often target professionals, hindering consumer understanding. National strategies advocate for registries to engage in consumer co-design to develop accessible, consumer-friendly resources that empower the community to make informed decisions using registry outputs. This publication outlines the process undertaken to translate four registry outputs into consumer-friendly resources. Objective: To develop resources that support consumers to understand and use registry outputs to make informed healthcare decisions. Method: The Consumer-Friendly Information project employed a three-stage co-design approach over 12 months: establishment, consultation and resource development. A mix of lived experience and general consumers were recruited through diverse channels including consumer organisations and clinicians. Consumers were educated on registry outputs, identified key messages and contributed to resource creation through prototypes and iterative feedback. Audience-specific considerations and continuous communication between consumers, registries, and designers helped to balance scientific accuracy and accessibility. Results: Nine consumers participated in the project, collaborating in three subgroups to co-design six resources (two per registry). These included one infographic, one fact sheet, one animation, one video and two booklets. The resources were shaped by consumer needs and preferences. Conclusion: This study demonstrates the value of co-design in translating registry outputs, emphasising the need for careful planning, expectation management and communication between stakeholders to ensure consumer-friendly and evidence-based resources are developed. Implications for health information management practice: This practical “how-to guide” documenting the co-design process will support broader adoption across registries and health organisations.