Young people with cancer are often described as ‘hard to reach’, ‘difficult to engage’ and/or ‘vulnerable’. Consequently, they are often over looked for patient and public involvement activities. We set out to involve young people with cancer to work as co-researchers in the design of the largest ever study of young people with cancer, called BRIGHTLIGHT. In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people as co-researchers, collaborators, consultants and dissemination partners. We chronicle the key points of this 10-year journey, sharing our success, describing our challenges and the solutions we put in place; sharing also what worked and did not work. Here we share some of these experiences of involving young people in this research and offer some practical advice for those looking to do the same. Background Young people with cancer, broadly those aged 13–24 years at diagnosis, warrant special attention; physiological and psychological growth creates complex psychosocial needs which neither adult nor child systems are suitably designed to deal with. Resulting from these needs, they are often described as ‘vulnerable’, ‘hard to reach’ and ‘difficult to engage’, and consequently are often over looked for patient and public involvement/engagement (PPIE) roles. In our study ‘BRIGHTLIGHT’, we set out to evaluate whether specialist care for young people adds value, ensuring young people were central to our PPIE activities. We believe that BRIGHTLIGHT is unique as a very large study of young people with cancer which has successfully overcome the challenges of including young people in the research process so we are confident that they have influenced every aspect of study design, conduct and dissemination. Methods We chronicle a period of 10 years, over which we describe our approach and our methods to involving young people in PPIE activities in BRIGHTLIGHT. We describe the feasibility work, study set up, conduct and dissemination of our findings, and weave through our story of PPIE to illustrate its benefits. Through the narration of our experience we highlight significant points that both influenced and changed our direction of travel. We reflect on our experiences and offer some practical advice for those looking to do the same. Results In the 10 years since the BRIGHTLIGHT feasibility work began we have involved more than 1200 young people. Their contributions have been isolated and mapped over a 10-year period. We begin at an early step of identifying what research questions to prioritize, we then plot PPIE activities for one of these research priorities, place of care, which evolved into BRIGHTLIGHT. We document steps along the way to evidence the impact of this involvement. Conclusions Young people can make a valuable contribution to healthcare research given adequate support from the research team. Although some challenges exist, we propose that the benefits to young people, researchers and the study considerably outweigh these challenges and PPIE with young people should be integrated in all similar research studies.

中文翻译：

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从研究开始到二次数据分析让年轻人参与 BRIGHTLIGHT：10 年用户参与的见解

患有癌症的年轻人通常被描述为“难以接触”、“难以参与”和/或“易受伤害”。因此，他们经常被过度寻找患者和公众参与活动。我们开始让患有癌症的年轻人作为共同研究人员参与设计有史以来规模最大的癌症年轻人研究，称为 BRIGHTLIGHT。自 BRIGHTLIGHT 可行性研究开始以来的 10 年里，我们已经让 1200 多名年轻人作为共同研究人员、合作者、顾问和传播合作伙伴参与进来。我们记录了这 10 年旅程的关键点，分享我们的成功，描述我们的挑战和我们实施的解决方案；分享什么有效，什么无效。在这里，我们分享一些让年轻人参与这项研究的经验，并为那些希望做同样事情的人提供一些实用的建议。背景 患有癌症的年轻人，通常是诊断时 13-24 岁的人，需要特别注意。生理和心理的成长产生了复杂的社会心理需求，无论是成人系统还是儿童系统都无法适当地处理这些需求。由于这些需求，他们经常被描述为“易受伤害”、“难以接触”和“难以参与”，因此往往被忽视了患者和公众参与/参与 (PPIE) 角色。在我们的研究“BRIGHTLIGHT”中，我们着手评估对年轻人的专科护理是否增加了价值，确保年轻人成为我们 PPIE 活动的核心。我们相信 BRIGHTLIGHT 作为一项针对患有癌症的年轻人的大型研究是独一无二的，它成功地克服了将年轻人纳入研究过程的挑战，因此我们相信他们影响了研究设计、实施和传播的各个方面。方法 我们记录了 10 年的时间，在此期间，我们描述了我们的方法和方法，让年轻人参与 BRIGHTLIGHT 中的 PPIE 活动。我们描述了可行性工作、研究设置、实施和传播我们的研究结果，并通过我们的 PPIE 故事来说明它的好处。通过叙述我们的经历，我们强调了影响和改变我们旅行方向的重要观点。我们反思我们的经验，并为那些希望这样做的人提供一些实用的建议。结果 自 BRIGHTLIGHT 可行性研究开始以来的 10 年中，我们已经参与了 1200 多名年轻人。他们的贡献在 10 年期间被隔离和绘制。我们从确定要优先考虑哪些研究问题的早期步骤开始，然后针对这些研究重点之一（即护理场所）绘制 PPIE 活动，这演变为 BRIGHTLIGHT。我们记录了沿途的步骤，以证明这种参与的影响。结论 在研究团队的充分支持下，年轻人可以为医疗保健研究做出宝贵贡献。尽管存在一些挑战，但我们建议对年轻人的好处，