BACKGROUND GlioCova uses linked national cancer data on all 51 000 adult patients with a primary brain tumour in England (2013 - 2018) to understand patterns of care, treatment, and outcomes in patients with glioma (http://wwwf.imperial.ac.uk/blog/gliocova/). A key aim is the use of patient and carer input in defining patient-centered outcomes. We have held multiple Patient & Public Involvement (PPI) sessions with patients and carergivers and data analysts to understand what patient and caregivers want to know about brain tumours. MATERIAL AND METHOD We used a modified Delphi method. The online PPI sessions (Zoom) consisted of two presentations, open discussions, and Q&As. We made the sessions as interactive as possible by using Mentimeter and an interactive online white board (Explain Everything). Pre-reading material was circulated via email. Attendees (6–14 per session) covered a wide range of ages (30–75), diagnoses (GBM, recurrent gliomas, low grade gliomas, ependymoma); patients, caregivers, neuro-oncology staff, data analysts and basic scientists. Work was conducted in line with the INVOLVE PPI guidance. RESULTS We identified four questions that were of interest to patients and had correlates in the data: Patients and caregivers were also interested in the impact of diet, quality of life, social life, and exercise. However, these data cannot be answered using the current national data. CONCLUSION Our PPI work has helped us to identify and prioritise questions to ask of the data. Ongoing PPI work will provide a wider perspective and identify knowledge gaps for future research. Patients and caregivers report feeling empowered, being part of a team, feeling like they had given something back and done something meaningful for the research community and other patients. Patients and caregivers also felt that they had an enriched understanding of the data that is collected. As this process is an iterative process, we will hold more PPI sessions to identify and prioritise topics to analyse.

中文翻译：

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P14.18 患者和公众参与从国家癌症数据集中定义以患者为中心的结果

背景 GlioCova 使用英格兰所有 51000 名原发性脑肿瘤成年患者（2013 - 2018 年）的相关国家癌症数据来了解胶质瘤患者的护理、治疗和结果模式（http://wwwf.imperial.ac.英国/博客/gliocova/）。一个关键目标是使用患者和护理人员的意见来定义以患者为中心的结果。我们与患者和护理人员以及数据分析师举行了多次患者和公众参与 (PPI) 会议，以了解患者和护理人员想要了解的有关脑肿瘤的信息。材料和方法 我们使用了一种改进的 Delphi 方法。在线 PPI 会议 (Zoom) 包括两个演示、公开讨论和问答。我们通过使用 Mentimeter 和交互式在线白板（解释一切）使会议尽可能具有交互性。预读材料通过电子邮件分发。与会者（每节 6-14 人）涵盖了广泛的年龄（30-75 岁）、诊断（GBM、复发性胶质瘤、低级别胶质瘤、室管膜瘤）；患者、护理人员、神经肿瘤学工作人员、数据分析师和基础科学家。工作是根据 INVOLVE PPI 指南进行的。结果 我们确定了患者感兴趣并与数据相关的四个问题：患者和护理人员也对饮食、生活质量、社交生活和锻炼的影响感兴趣。但是，这些数据不能用当前的国家数据来回答。结论 我们的 PPI 工作帮助我们识别并优先考虑要询问数据的问题。正在进行的 PPI 工作将为未来的研究提供更广阔的视野并确定知识差距。患者和护理人员报告说感到有能力，作为团队的一员，感觉他们已经回馈了一些东西，并为研究界和其他患者做了一些有意义的事情。患者和护理人员还认为他们对收集的数据有了更丰富的理解。由于这个过程是一个迭代过程，我们将举行更多的 PPI 会议来识别和优先分析要分析的主题。