When Research Evidence and Healthcare Policy Collide: Synergising Results and Policy into BRIGHTLIGHT Guidance to Improve Coordinated Care for Adolescents and Young Adults with Cancer

当研究证据与医疗政策发生碰撞:将研究成果与政策相结合,制定 BRIGHTLIGHT 指南,以改善青少年和年轻癌症患者的协调护理

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Abstract

Background/Objectives: BRIGHTLIGHT was the national evaluation of adolescent and young adult (AYA) cancer services in England. BRIGHTLIGHT results were not available when the most recent healthcare policy (NHSE service specifications for AYA Cancer) for AYA was drafted and therefore did not consider BRIGHTLIGHT findings and recommendations. We describe the co-development and delivery of a Policy Lab to expedite the implementation of the new service specification in the context of BRIGHTLIGHT results, examining the roles of multi-stakeholders to ensure service delivery is optimised to benefit AYA patients. We address the key question, "What is the roadmap for empowering different stakeholders to shape how the AYA service specifications are implemented?". Methods: A 1-day face-to-face policy lab was facilitated, utilising a unique, user-centric engagement approach by bringing diverse AYA stakeholders together to co-design strategies to translate BRIGHTLIGHT evidence into policy and impact. This was accompanied by an online workshop and prioritisation survey, individual interviews, and an AYA patient workshop. Workshop outputs were analysed thematically and survey data quantitatively. Results: Eighteen professionals and five AYAs attended the face-to-face Policy Lab, 16 surveys were completed, 13 attended the online workshop, three professionals were interviewed, and three AYAs attended the patient workshop. The Policy Lab generated eight national and six local recommendations, which were prioritised into three national priorities: 1. Launching the service specification supported by compelling communication; 2. Harnessing the ideas of young people; and 3. Evaluation of AYA patient outcomes/experiences and establishing a national dashboard of AYA cancer network performance. An animation was created by AYAs to inform local hospitals what matters to them most in the service specification. Conclusions: Policy and research evidence are not always aligned, so when emerging evidence does not support current guidance, further exploration is required. We have shown through multi-stakeholder involvement including young people that it was possible to gain a different interpretation based on current knowledge and context. This additional insight enabled practical recommendations to be identified to support the implementation of the service specification.

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