Title: BRIGHTLIGHT research to practice: Extended dissemination from a completed Programme Grant for Applied Research evaluating outcomes associated with specialist cancer services for teenage and young adults (RELAY_ME)
Funder: Department of Health and Social Care

Abstract: Background In England, approximately 2,100 new cancers occur in teenagers and young adults (TYA) aged 16-24 annually. Specialist services provide care in thirteen Principal Treatment Centres (TYA-PTC) delivering comprehensive treatments required for multiple rare cancers occurring in TYA and deliver holistic psychosocial support that is essential to meeting the unique and specific needs of TYA. BRIGHTLIGHT was a national evaluation of this model of TYA-PTC specialist care, which was supported by the NIHR through a PGfAR (RP-PG-1209-10013). This evaluation adopted a mixed-methods design with a qualitative study exploring the culture of care and quantitative studies investigating the outcomes and costs associated with TYA-PTCs. The quantitative data indicated outcomes were sub-optimal for those receiving care between a TYA-PTC and another cancer unit. In contrast, the qualitative data indicated more positive perceptions of the TYA-PTC compared to other cancer units, but critically that time was needed for the culture of TYA care to develop. We have presented our results using traditional scientific methods and an artistic performance. The latter had a memorable impact on healthcare professionals and patients and raised the profile of cancer in young people. Unfortunately, BRIGHTLIGHT results were not finalised in time for the commissioning of TYA services and some of the proposed recommendations are counterintuitive to the findings, for example care between the TYA-PTC and surrounding cancer units is advocated. Aims and Objectives The aim of this application is to maximise the dissemination of BRIGHTLIGHT results to inform practice and policy. We will: Work with young people to develop an interactive artwork, Fun with BRIGHTLIGHT Performance Kit, a Performance in a Box, to engage audiences in communicating BRIGHTLIGHT results. To develop videos of conversations between young people and healthcare professionals using Fun with BRIGHTLIGHT Performance Kits as central script and conversation starting point. Work with key stakeholders including commissioners to develop recommendations for the delivery of TYA cancer services, based on BRIGHTLIGHT results and the assimilation of evidence in a literature review. Development work plan RELAY_ME comprises two projects: Co-Creating a contemporary performance tool: Fun with BRIGHTLIGHT Performance Kit. This is planned to involve a diverse group of healthcare professionals and young people in five cities/towns in England, in creating performances based on Relational Aesthetics. There will be two performances in each TYA-PTC (n=10). Videos of conversations between young people and healthcare professionals using the Performance Kits as central script for conversation starting points will be developed. The Performance Kits will be designed and made available to download from the BRIGHTLIGHT website. Use Policy Lab methodology to work with young people and key stakeholders to develop recommendations as policy-focused briefing notes. Timelines for delivery Fun with BRIGHTLIGHT and the Policy Lab recommendations will be completed by December 2022. Anticipated Impact and Dissemination The focus of this application is dissemination, using novel and new methods to involve young people, healthcare professionals and other key stakeholders in interpretation and dissemination. We anticipate that this collaborative involvement will facilitate implementation of local and national recommendations.

Lay abstract: Background Each year in England, around 2,100 young people aged 16-24 years are diagnosed with cancer. During treatment, these young patients are more likely to experience negative impacts on their education, mental health, and relationships with friends and families. They need specialist care that takes these additional needs into account. Thirteen cancer hospitals - called Principal Treatment Centres (PTCs) - specialise in treating young people, but not all patients of this age group are treated in PTCs. They may have all their care in a PTC, or in a children s or adult hospital, or receive care in both a PTC and another hospital. Our previous NIHR-funded BRIGHTLIGHT study involved six projects looking at where young people were treated, who cared for them, how much it cost and their experiences of care. Some of the results did not show benefit of being treated in a PTC but other findings indicated it took time for the culture of specialist care to develop and the benefits might not have been found because services were still developing. Aims The aim of this project is to make the BRIGHTLIGHT results as clear as possible so they can be understood by many different people, including those who decide how services should be delivered for young people. Our goal is to connect the results from our work to the design of specialist cancer care, supporting improved outcomes for young people. How will we do this? We will run workshops involving a mix of young people, their social support networks and healthcare professionals to present BRIGHTLIGHT results. They will work with an actor to create theatrical performances to help young people, healthcare professions and people who decide which services the NHS uses, to understand the results. These will be in five cities in England so they will reflect the diversity of the local population. We will create short videos from the theatrical performance, hosted on the BRIGHTLIGHT website, to help young people have conversations about their care. We will hold joint workshops with patients and professionals, so those who decide how care is delivered can design services informed by young patients concerns and experiences. PPI Young people co-create all of our workshops and are part of our team. Outputs/Dissemination. Widespread dissemination is key to this work. Methods will include a theatrical performance and informative multimedia videos, as well as publication in scientific papers. This sharing of results will support effective design of care pathways for young people, inform decisions about where they are best treated and so contribute to the best possible outcomes for cancer patients aged 16-24 years.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES;7.1 INDIVIDUAL CARE NEEDS
Health categories: CANCER AND NEOPLASMS