Taylor Rachel M, Connors Ben, Forster Alice, Haddad Laura, Hughes Luke, Lawal Maria, Petrella Anika, Fern Lorna A
Centre for Nurse, Midwife and Allied Health Profession Led Research (CNMAR), University College London Hospitals NHS Foundation Trust, London, UK.
Department of Targeted Intervention, University College London, London, UK.
Res Involv Engagem. 2025 May 29;11(1):57. doi: 10.1186/s40900-025-00739-7.
BRIGHTLIGHT was the first national evaluation of teenage and young adult (TYA) cancer services in England. BRIGHTLIGHT evaluated care for TYA aged 13 to 24 years at diagnosis and comprised six interlinked studies. Young people have been involved in BRIGHTLIGHT design, operational troubleshooting and dissemination. Divergent conclusions emerged from the programme, which healthcare professionals could not explain. We sought to gather young people's interpretation of the results based on their lived experience of cancer.
Seven members of the BRIGHTLIGHT Young Advisory Panel (YAP) participated in a one-day workshop and two members acted as co-researchers. An overview of the BRIGHTLIGHT studies and key results were presented. To facilitate interpretation an artist illustrated the results in real-time. A focus group style discussion followed the presentation and was also illustrated.
The YAP made some key interpretations of the results not identified by researchers including the length of follow-up (3-years was not long enough) and how specialist care had been defined (using number of admissions rather than duration of hospitalisation). They explained the higher healthcare costs in those receiving care in more than one hospital, could be due to duplication of tests/scans. The YAP also identified that the results did not relay the importance of the diagnostic experience, which also incurred costs to TYA/families.
Patient experience adds further interpretation to complex study results beyond what is visible to healthcare professionals. The YAP added further insight to results and contributed to the formulation of the conclusion for the BRIGHTLIGHT programme grant.
“明亮之光”（BRIGHTLIGHT）是对英格兰青少年和青年成人（TYA）癌症服务进行的首次全国性评估。“明亮之光”评估了13至24岁TYA患者确诊时的护理情况，包括六项相互关联的研究。年轻人参与了“明亮之光”的设计、运营故障排除和传播工作。该项目得出了不同的结论，医疗保健专业人员无法对此作出解释。我们试图根据年轻人患癌症的亲身经历，收集他们对研究结果的解读。
“明亮之光”青年咨询小组（YAP）的七名成员参加了为期一天的研讨会，两名成员担任共同研究人员。会上介绍了“明亮之光”研究的概述和关键结果。为便于解读，一名艺术家实时描绘了研究结果。介绍之后进行了焦点小组形式的讨论，讨论过程也有描绘。
YAP对研究结果作出了一些研究人员未发现的关键解读，包括随访时间（3年不够长）以及专科护理的定义方式（使用入院次数而非住院时长）。他们解释说，在多家医院接受治疗的患者医疗费用较高，可能是由于检查/扫描的重复。YAP还指出，研究结果没有体现出诊断体验的重要性，而这也给TYA患者/家庭带来了成本。
患者体验为复杂的研究结果增添了医疗保健专业人员所看不到的进一步解读。YAP为研究结果提供了更多见解，并有助于为“明亮之光”项目拨款制定结论。
