Research data supporting "Societal views on using risk-based innovations to inform cancer screening and referral policies: findings from three community juries"

The Ribbons Community Juries aimed to explore the views of the public, at a societal level, of using a variety of innovations to identify people’s risk of cancer and using this to prioritise them for screening or diagnostic tests. We conducted three online and in-person community juries with 7-9 participants in each. After an introduction to the study, participants watched pre-recorded presentations that detailed the key clinical, ethical and regulatory concepts for future risk-based innovations (using six exemplars). Each was followed by questions and answers. We then conducted focus groups to encourage participants to consider and share their views as the group (facilitated discussion 1), then left the participants to seek an agreement on the research questions (unfacilitated deliberation). Once the participants were ready, they shared their verdicts (feedback session). Finally, the participants considered barriers and facilitators to acceptability in a final focus group (facilitated discussion 2). The dataset is the anonymised transcripts from the community juries (question and answer session, facilitated discussion 1, unfacilitated deliberation, feedback session and facilitated discussion 2). Consent was given by the participants to share anonymised data with other responsible researchers. As consent was not given by participants to share publicly it is not possible to add the data to the repository. Instead, the data are stored within the Primary Care Unit and researchers can request access by contacting [e-mail] or Dr Rebecca Dennison ([e-mail]). Applicants will be required to complete a Data Access Agreement that will indicate the criteria for data access and conditions for research use and will incorporate privacy and confidentiality standards to ensure data security. Study documents (protocol, participant information sheet, consent form, jury outline, topic guide, and questionnaires) are included with this record.

丝带社区陪审团（Ribbons Community Juries）研究旨在从社会层面探索公众对采用多种创新技术识别个体癌症患病风险、并据此对筛查或诊断测试受检对象进行优先级排序的看法。本研究共举办三场线上及线下结合的社区陪审团活动，每场招募7至9名参与者。在向参与者介绍研究概况后，我们播放了预先录制的演示文稿，详细阐释了面向未来基于风险的创新技术所涉及的核心临床、伦理与监管相关概念（共包含6个示范案例），每场演示结束后均设置问答环节。随后我们组织焦点小组讨论（focus group），引导参与者以小组为单位思考并分享观点（引导式讨论1），之后让参与者在无引导状态下就研究问题达成共识（非引导式审议）。待参与者准备完毕后，他们将分享各自的审议结论（反馈环节）。最后，我们通过最后一场焦点小组讨论，探讨了影响该类技术可接受性的阻碍因素与促进因素（引导式讨论2）。本数据集即来自各场社区陪审团活动的匿名转录文本，涵盖问答环节、引导式讨论1、非引导式审议、反馈环节以及引导式讨论2的全部内容。参与者已同意将匿名数据分享给其他负责任的研究人员。但由于参与者未同意将数据公开共享，因此无法将数据集上传至公共存储库。目前数据存储于剑桥大学医学院初级保健单元（Primary Care Unit），研究人员若需获取数据，可通过联系[e-mail]邮箱或丽贝卡·丹尼森博士（Dr Rebecca Dennison，邮箱：[e-mail]）提出申请。申请人需签署《数据访问协议》，协议将明确数据访问标准与研究使用条件，并纳入隐私与保密标准以保障数据安全。本记录还附带了相关研究文件，包括研究方案、参与者信息告知单、知情同意书、陪审团活动大纲、主题指南以及调查问卷。