Donoso Francisca Stutzin, Carver Tim, Ficorella Lorenzo, Fennell Nichola, Antoniou Antonis C, Easton Douglas F, Tischkowitz Marc, Walter Fiona M, Usher-Smith Juliet A, Archer Stephanie
Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK.
Department of Medical Genetics, National Institute for Health Research Cambridge Biomedical Research Centre, University of Cambridge, Cambridge, UK.
J Community Genet. 2024 Oct;15(5):499-515. doi: 10.1007/s12687-024-00729-4. Epub 2024 Sep 25.
Multifactorial cancer risk prediction tools, such as CanRisk, are increasingly being incorporated into routine healthcare. Understanding risk information and communicating risk is challenging and healthcare professionals rely substantially on the outputs of risk prediction tools to communicate results. This work aimed to produce a new CanRisk report so users can directly access key information and communicate risk estimates effectively.
Over a 13-month period, we led an 8-step co-design process with patients, the public, and healthcare professionals. Steps comprised 1) think aloud testing of the original CanRisk report; 2) structured feedback on the original report; 3) literature review; 4) development of a new report prototype; 5) first round of structured feedback; 6) updating the new report prototype; 7) second round of structured feedback; and 8) finalising and publishing the new CanRisk report.
We received 56 sets of feedback from 34 stakeholders. Overall, the original CanRisk report was not suitable for patients and the public. Building on the feedback, the new report has an overview of the information presented: section one summarises key information for individuals; sections two and three present information for healthcare professionals in different settings. New features also include explanatory text, definitions, graphs, keys and tables to support the interpretation of the information.
This co-design experience shows the value of collaboration for the successful communication of complex health information. As a result, the new CanRisk report has the potential to better support shared decision-making processes about cancer risk management across clinical settings.
多因素癌症风险预测工具,如CanRisk,正越来越多地被纳入常规医疗保健中。理解风险信息并传达风险具有挑战性,医疗保健专业人员在很大程度上依赖风险预测工具的输出结果来传达信息。这项工作旨在制作一份新的CanRisk报告,以便用户能够直接获取关键信息并有效地传达风险评估结果。
在13个月的时间里,我们与患者、公众和医疗保健专业人员共同开展了一个8步协同设计过程。步骤包括:1)对原始CanRisk报告进行出声思考测试;2)对原始报告进行结构化反馈;3)文献综述;4)开发新报告原型;5)第一轮结构化反馈;6)更新新报告原型;7)第二轮结构化反馈;8)最终确定并发布新的CanRisk报告。
我们收到了来自34个利益相关者的56组反馈。总体而言,原始CanRisk报告不适合患者和公众。基于这些反馈,新报告对所呈现的信息进行了概述:第一部分总结了个人的关键信息;第二部分和第三部分为不同环境下的医疗保健专业人员提供信息。新功能还包括解释性文本、定义、图表、关键信息和表格,以支持对信息的解读。
这种协同设计经验表明了合作对于成功传达复杂健康信息的价值。因此,新的CanRisk报告有可能更好地支持跨临床环境的癌症风险管理共享决策过程。