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一篇关于眼科患者共同设计一种新工具以更好理解其医院信件的评论。

A commentary on ophthalmic patients co-designing a new tool to better understand their hospital letters.

作者信息

Sumodhee Dayyanah, Venning Kristina, Moghul Ismail, Wemyss Thomas, Ramessur Rishi, Abbas Mohammed, Ioannidou Estelle, Baker Helen, Nguyen Quang, Wang Cong, Balaskas Konstantinos, Pontikos Nikolas, Thomas Peter

机构信息

Moorfields Eye Hospital, NHS Foundation Trust, 162 City Road, London, EC1V 2PD, UK.

UCL Institute of Ophthalmology, University College London, 11-43 Bath Street, London, London, EC1V 9EL, UK.

出版信息

Res Involv Engagem. 2025 Mar 18;11(1):25. doi: 10.1186/s40900-025-00697-0.

Abstract

​​Patient and Public Involvement and Engagement (PPIE) is recognised by the National Institute for Health and Care Research in the UK as crucial for high-quality outcomes with numerous benefits for patients. Patient and public contributors can provide both personal knowledge and lived experiences which complement the perspectives of the team. In this commentary, we share our experiences of facilitating a project, Explain.Health, to co-design a digital platform to help patients better understand their hospital letters by explaining medical terms. We describe the stages in the formation of the PPIE group, the stages in the co-design process and the next steps for the project. We reflect on PPIE of the project, including lessons learned for future PPIE work in building new digital platforms. Important considerations for this PPIE work include: (1) ensuring each public contributor feels listened to and understands how their involvement contributes to the design of the platform, (2) providing regular and clear communication and (3) offering adequate support to public contributors (appropriate formatting of resources for visually impaired contributors, incentives, assistance to use the meeting platform) to establish an inclusive and considerate approach. These findings can inform future PPIE plans for stakeholders involved in similar projects.

摘要

患者及公众参与和合作(PPIE)在英国被国家卫生与保健研究所视为高质量成果的关键因素,对患者有诸多益处。患者和公众贡献者能够提供个人知识和生活经验,补充团队的观点。在本评论中,我们分享了推动一个名为“解释健康”(Explain.Health)项目的经验,该项目旨在共同设计一个数字平台,通过解释医学术语帮助患者更好地理解他们的医院信件。我们描述了PPIE小组形成的阶段、共同设计过程的阶段以及该项目的后续步骤。我们反思了该项目的PPIE情况,包括在构建新数字平台方面未来PPIE工作可吸取的经验教训。这项PPIE工作的重要考虑因素包括:(1)确保每位公众贡献者感到被倾听,并理解他们的参与如何有助于平台的设计;(2)提供定期且清晰的沟通;(3)为公众贡献者提供充分支持(为视障贡献者提供适当格式的资源、激励措施、使用会议平台的协助),以建立一种包容且体贴的方法。这些发现可为参与类似项目的利益相关者未来的PPIE计划提供参考。

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