Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach
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 increase...
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| Vydané v: | JMIR formative research Ročník 9; s. e60897 |
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| Hlavní autori: | , , , , , , , , , |
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| Jazyk: | English |
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JMIR Publications
11.07.2025
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| ISSN: | 2561-326X, 2561-326X |
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| Abstract | 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. |
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| AbstractList | 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.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.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.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.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.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.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.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.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.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. Background: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.Objective: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.Methods: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.Results: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.Conclusions: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. 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. 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. |
| Author | van Eenbergen, Mies C Bakker, Daphne Manten, Eveliene Husson, Olga Vlooswijk, Carla de Groot, Lisanne Heine, Peter Pluis, Jonas Vandekerckhove, Pieter Sleeman, Sophia HE |
| AuthorAffiliation | 7 Delft Centre for Entrepreneurship Delft University of Technology Delft The Netherlands 6 Department of Public Health Erasmus MC Cancer Institute Erasmus University Medical Center Rotterdam The Netherlands 3 Kanker.nl Foundation Amsterdam The Netherlands 4 Department of Medical Oncology The Netherlands Cancer Institute Amsterdam The Netherlands 1 Department of Research and Development Netherlands Comprehensive Cancer Organisation Utrecht The Netherlands 2 Dutch AYA 'Young & Cancer' Care Network Utrecht The Netherlands 5 Department of Surgical Oncology Erasmus University Medical Center Rotterdam The Netherlands |
| AuthorAffiliation_xml | – name: 7 Delft Centre for Entrepreneurship Delft University of Technology Delft The Netherlands – name: 6 Department of Public Health Erasmus MC Cancer Institute Erasmus University Medical Center Rotterdam The Netherlands – name: 5 Department of Surgical Oncology Erasmus University Medical Center Rotterdam The Netherlands – name: 3 Kanker.nl Foundation Amsterdam The Netherlands – name: 1 Department of Research and Development Netherlands Comprehensive Cancer Organisation Utrecht The Netherlands – name: 4 Department of Medical Oncology The Netherlands Cancer Institute Amsterdam The Netherlands – name: 2 Dutch AYA 'Young & Cancer' Care Network Utrecht The Netherlands |
| Author_xml | – sequence: 1 givenname: Carla orcidid: 0000-0001-8885-6302 surname: Vlooswijk fullname: Vlooswijk, Carla – sequence: 2 givenname: Sophia HE orcidid: 0000-0002-4882-3562 surname: Sleeman fullname: Sleeman, Sophia HE – sequence: 3 givenname: Jonas orcidid: 0009-0006-3972-1819 surname: Pluis fullname: Pluis, Jonas – sequence: 4 givenname: Daphne orcidid: 0009-0008-9642-3409 surname: Bakker fullname: Bakker, Daphne – sequence: 5 givenname: Lisanne orcidid: 0009-0000-6369-4458 surname: de Groot fullname: de Groot, Lisanne – sequence: 6 givenname: Eveliene orcidid: 0000-0002-3588-127X surname: Manten fullname: Manten, Eveliene – sequence: 7 givenname: Peter orcidid: 0000-0002-0943-3895 surname: Heine fullname: Heine, Peter – sequence: 8 givenname: Olga orcidid: 0000-0001-6965-0851 surname: Husson fullname: Husson, Olga – sequence: 9 givenname: Mies C orcidid: 0000-0001-6731-3296 surname: van Eenbergen fullname: van Eenbergen, Mies C – sequence: 10 givenname: Pieter orcidid: 0000-0003-0858-6563 surname: Vandekerckhove fullname: Vandekerckhove, Pieter |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/40644683$$D View this record in MEDLINE/PubMed |
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| Copyright | Carla Vlooswijk, Sophia HE Sleeman, Jonas Pluis, Daphne Bakker, Lisanne de Groot, Eveliene Manten, Peter Heine, Olga Husson, Mies C van Eenbergen, Pieter Vandekerckhove. Originally published in JMIR Formative Research (https://formative.jmir.org), 11.07.2025. 2025. This work is licensed under https://creativecommons.org/licenses/by/4.0/ (the “License”). Notwithstanding the ProQuest Terms and Conditions, you may use this content in accordance with the terms of the License. Carla Vlooswijk, Sophia HE Sleeman, Jonas Pluis, Daphne Bakker, Lisanne de Groot, Eveliene Manten, Peter Heine, Olga Husson, Mies C van Eenbergen, Pieter Vandekerckhove. Originally published in JMIR Formative Research (https://formative.jmir.org), 11.07.2025. 2025 |
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| Keywords | development adolescents and young adults with cancer teens youth peer support age-specific quantitative questionnaire design patient involvement patient experiences collaborative design online platform internet |
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| License | Carla Vlooswijk, Sophia HE Sleeman, Jonas Pluis, Daphne Bakker, Lisanne de Groot, Eveliene Manten, Peter Heine, Olga Husson, Mies C van Eenbergen, Pieter Vandekerckhove. Originally published in JMIR Formative Research (https://formative.jmir.org), 11.07.2025. This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included. |
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| SubjectTerms | Adolescent Adult Cancer Survivors - psychology Collaboration Cooperative Behavior Decision making Female Focus Groups Humans Internet Male Neoplasms Netherlands Original Paper Stakeholder Participation Surveys and Questionnaires Teenagers Young Adult Young adults |
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| Title | Developing and Integrating Digital Sources in an Accessible and Sustainable Online Platform for Adolescents and Young Adult Cancer Survivors: Collaborative Design Approach |
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