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

<b>Background:</b> 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. <b>Objective:</b> To develop resources that support consumers to understand and use registry outputs to make informed healthcare decisions. <b>Method:</b> 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. <b>Results:</b> 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. <b>Conclusion:</b> 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. <b>Implications for health information management practice:</b> This practical "how-to guide" documenting the co-design process will support broader adoption across registries and health organisations.

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Publication Details

Journal
Health Information Management Journal
Published
2025-07-14
DOI
https://doi.org/10.1177/18333583251350437
Citations
1
Primary Topic
Health Literacy and Information Accessibility
Type
article
Field-Weighted Citation Impact
2.82

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article

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

Helen Radoslovich, Miriam C. Keane, Stephanie L. Harrison, Anita Deakin et al.
1 citations
Health Information Management Journal
Health Literacy and Information Accessibility
2.82
article

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

Helen Radoslovich, Miriam C. Keane, Stephanie L. Harrison, Anita Deakin, Gillian E. Caughey, Keryn A. Williams, Tesfahun C. Eshetie, Maria C. Inacio, Michelle Lorimer, C. A. P. Turner, Stephen P. McDonald, Sarah Eley, Caitlin Wyman
article en
1 citations

Abstract

<b>Background:</b> 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. <b>Objective:</b> To develop resources that support consumers to understand and use registry outputs to make informed healthcare decisions. <b>Method:</b> 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. <b>Results:</b> 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. <b>Conclusion:</b> 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. <b>Implications for health information management practice:</b> This practical "how-to guide" documenting the co-design process will support broader adoption across registries and health organisations.

Health Information Management JournalVol. 55(1)
Flinders University (AU), Australia and New Zealand Dialysis and Transplant Registry (AU), South Australian Health and Medical Research Institute (AU), The University of Adelaide (AU), Australasian College for Emergency Medicine (AU)
Department of Health and Aged Care, Australian Government
Openalex Percentile: Top 10%
Health Literacy and Information Accessibility
2.82
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