TY - JOUR
T1 - Enhancing registry impact
T2 - Translating registry outputs into Consumer-Friendly Information (CoFI project) through consumer co-design
AU - Eley, Sarah
AU - Wyman, Caitlin
AU - Turner, Cindy
AU - Caughey, Gillian E.
AU - Williams, Keryn
AU - Keane, Miriam C.
AU - Deakin, Anita
AU - Lorimer, Michelle
AU - Harrison, Stephanie L.
AU - Eshetie, Tesfahun C.
AU - Radoslovich, Helen
AU - McDonald, Stephen
AU - Inacio, Maria C.
PY - 2026/1
Y1 - 2026/1
N2 - 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.
AB - 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.
KW - community involvement
KW - community-based participatory research
KW - data collection
KW - health information management
KW - health promotion
KW - patient participation
KW - records
KW - registries
KW - stakeholder participation
UR - http://www.scopus.com/inward/record.url?scp=105012735097&partnerID=8YFLogxK
U2 - 10.1177/18333583251350437
DO - 10.1177/18333583251350437
M3 - Article
AN - SCOPUS:105012735097
SN - 1833-3583
VL - 55
SP - 159
EP - 165
JO - Health Information Management Journal
JF - Health Information Management Journal
IS - 1 Special Issue
ER -
