Vlooswijk Carla, Sleeman Sophia He, Pluis Jonas, Bakker Daphne, de Groot Lisanne, Manten Eveliene, Heine Peter, Husson Olga, van Eenbergen Mies C, Vandekerckhove Pieter
Department of Research and Development, Netherlands Comprehensive Cancer Organisation, Utrecht, The Netherlands.
Dutch AYA 'Young & Cancer' Care Network, Utrecht, The Netherlands.
JMIR Form Res. 2025 Jul 11;9:e60897. doi: 10.2196/60897.
Digital support for adolescent and young adult cancer survivors is fragmented and results in lacking a reliable overview of support services available to them. Collaborative design promises to integrate perspectives of diverse stakeholders and could help to develop an online platform, which increases access and has a long-term perspective. However, it has not yet been explored how collaborative design can be used more strategically to develop an online platform with these aims.
This study aimed to explore how a collaborative design approach could be applied to develop an online platform for adolescent and young adult cancer survivors, focusing on three key objectives: integrating existing resources, improving accessibility, and ensuring long-term financial sustainability.
In this action research study, we reflect on a collaborative design process to develop an online platform for adolescent and young adult cancer survivors. A quantitative questionnaire was sent out to adolescent and young adult cancer survivors and health care professionals. Stakeholders were actively engaged in stakeholder consensus meetings, and project management was carried out through monthly design meetings to facilitate coordination and decision-making of the development of the platform. Afterwards, a focus group was conducted among the project group to evaluate the collaborative design approach, analyzed using an inductive thematic approach.
Through the collaborative design approach, several Dutch organizations collaborated to develop, enhance, and combine online services for adolescent and young adult cancer survivors and their relatives. A dedicated online "young and cancer" platform for adolescent and young adult cancer survivors was developed, which integrates different types of information tools and supportive interactive elements from different sources. The integration of different resources into one platform improves the access and user experience of adolescent and young adult cancer survivors when it comes to online support. Through the reflection about the collaborative process, three themes were identified: (1) value of stakeholder participation; (2) conditions for working with adolescents and young adults with lived experience; and (3) collaboration between adolescents and young adults with lived experience and professionals from different backgrounds and organizations.
A collaborative design approach can be used to efficiently develop an online platform for adolescent and young adult cancer survivors. The collaboration among professionals, including online developers, researchers, and adolescents and young adults with lived experience facilitated a direct translation of insights into the platform, while the support of the national cancer platform provides long-term sustainability. This study highlights the importance of strategic stakeholder selection and the intense involvement of stakeholders through a collaborative design approach.
针对青少年及年轻成人癌症幸存者的数字支持较为分散，导致他们无法全面了解可获得的支持服务。协作设计有望整合不同利益相关者的观点，并有助于开发一个在线平台，该平台既能增加服务获取途径，又具有长远眼光。然而，尚未探讨如何更具策略性地运用协作设计来开发实现这些目标的在线平台。
本研究旨在探讨如何应用协作设计方法来开发一个针对青少年及年轻成人癌症幸存者的在线平台，重点关注三个关键目标：整合现有资源、提高可及性以及确保长期财务可持续性。
在这项行动研究中，我们反思了为青少年及年轻成人癌症幸存者开发在线平台的协作设计过程。向青少年及年轻成人癌症幸存者以及医疗保健专业人员发放了定量问卷。利益相关者积极参与利益相关者共识会议，并通过每月的设计会议进行项目管理，以促进平台开发的协调与决策。之后，在项目组中开展了焦点小组讨论，以评估协作设计方法，并采用归纳主题分析法进行分析。
通过协作设计方法，几家荷兰组织合作开发、增强并整合了面向青少年及年轻成人癌症幸存者及其亲属的在线服务。为青少年及年轻成人癌症幸存者开发了一个专门的在线“年轻与癌症”平台，该平台整合了来自不同来源的不同类型信息工具和支持性互动元素。将不同资源整合到一个平台上，改善了青少年及年轻成人癌症幸存者在获取在线支持方面的途径和用户体验。通过对协作过程的反思，确定了三个主题：（1）利益相关者参与的价值；（2）与有实际经验的青少年及年轻成人合作的条件；（3）有实际经验的青少年及年轻成人与来自不同背景和组织的专业人员之间的合作。
协作设计方法可用于高效开发针对青少年及年轻成人癌症幸存者的在线平台。包括在线开发者、研究人员以及有实际经验的青少年及年轻成人在内的专业人员之间的合作，促进了见解直接转化为平台内容，而国家癌症平台的支持提供了长期可持续性。本研究强调了策略性选择利益相关者以及通过协作设计方法让利益相关者深度参与的重要性。
