Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach
BackgroundDigital 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...
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| Format: | Article |
| Language: | English |
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JMIR Publications
2025-07-01
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| Series: | JMIR Formative Research |
| Online Access: | https://formative.jmir.org/2025/1/e60897 |
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| author | Carla Vlooswijk Sophia HE Sleeman Jonas Pluis Daphne Bakker Lisanne de Groot Eveliene Manten Peter Heine Olga Husson Mies C van Eenbergen Pieter Vandekerckhove |
| author_facet | Carla Vlooswijk Sophia HE Sleeman Jonas Pluis Daphne Bakker Lisanne de Groot Eveliene Manten Peter Heine Olga Husson Mies C van Eenbergen Pieter Vandekerckhove |
| author_sort | Carla Vlooswijk |
| collection | DOAJ |
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BackgroundDigital 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.
ObjectiveThis 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.
MethodsIn 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.
ResultsThrough 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.
ConclusionsA 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. |
| format | Article |
| id | doaj-art-240a02eec11741038f380ccdb64a7cef |
| institution | DOAJ |
| issn | 2561-326X |
| language | English |
| publishDate | 2025-07-01 |
| publisher | JMIR Publications |
| record_format | Article |
| series | JMIR Formative Research |
| spelling | doaj-art-240a02eec11741038f380ccdb64a7cef2025-08-20T03:17:47ZengJMIR PublicationsJMIR Formative Research2561-326X2025-07-019e6089710.2196/60897Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design ApproachCarla Vlooswijkhttps://orcid.org/0000-0001-8885-6302Sophia HE Sleemanhttps://orcid.org/0000-0002-4882-3562Jonas Pluishttps://orcid.org/0009-0006-3972-1819Daphne Bakkerhttps://orcid.org/0009-0008-9642-3409Lisanne de Groothttps://orcid.org/0009-0000-6369-4458Eveliene Mantenhttps://orcid.org/0000-0002-3588-127XPeter Heinehttps://orcid.org/0000-0002-0943-3895Olga Hussonhttps://orcid.org/0000-0001-6965-0851Mies C van Eenbergenhttps://orcid.org/0000-0001-6731-3296Pieter Vandekerckhovehttps://orcid.org/0000-0003-0858-6563 BackgroundDigital 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. ObjectiveThis 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. MethodsIn 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. ResultsThrough 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. ConclusionsA 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.https://formative.jmir.org/2025/1/e60897 |
| spellingShingle | Carla Vlooswijk Sophia HE Sleeman Jonas Pluis Daphne Bakker Lisanne de Groot Eveliene Manten Peter Heine Olga Husson Mies C van Eenbergen Pieter Vandekerckhove Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach JMIR Formative Research |
| title | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
| title_full | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
| title_fullStr | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
| title_full_unstemmed | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
| title_short | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
| title_sort | developing and integrating digital sources in an accessible and sustainable online platform for adolescents and young adult cancer survivors collaborative design approach |
| url | https://formative.jmir.org/2025/1/e60897 |
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