Improving the communication of multifactorial cancer risk assessment results for different audiences: a co-design process.

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2024-10-01 Epub Date: 2024-09-25 DOI:10.1007/s12687-024-00729-4
Francisca Stutzin Donoso, Tim Carver, Lorenzo Ficorella, Nichola Fennell, Antonis C Antoniou, Douglas F Easton, Marc Tischkowitz, Fiona M Walter, Juliet A Usher-Smith, Stephanie Archer
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Abstract

Background: 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.

Methods: 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.

Results: 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.

Discussion: 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.

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针对不同受众改进多因素癌症风险评估结果的传播:共同设计过程。
背景: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。理解风险信息和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于风险预测工具的输出结果来传达结果。这项工作旨在制作一份新的 CanRisk 报告,以便用户可以直接获取关键信息,并有效传达风险估计结果:方法:在 13 个月的时间里,我们与患者、公众和医疗保健专业人士共同设计了一个由 8 个步骤组成的流程。步骤包括:1)对原始 CanRisk 报告进行大声思考测试;2)对原始报告进行结构化反馈;3)文献综述;4)开发新的报告原型;5)第一轮结构化反馈;6)更新新的报告原型;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 个利益相关方的 56 组反馈意见。总的来说,最初的 CanRisk 报告并不适合患者和公众。根据反馈意见,新报告对所提供的信息进行了概述:第一部分概述了针对个人的关键信息;第二和第三部分介绍了针对不同环境下医疗保健专业人员的信息。新功能还包括解释性文字、定义、图表、关键字和表格,以支持对信息的解读:讨论:这一共同设计的经验表明,合作对于成功传播复杂的健康信息很有价值。因此,新的 CanRisk 报告有可能更好地支持临床环境中癌症风险管理的共同决策过程。
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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
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