JMIR Publications

ABSTRACT

Background:

Several Dutch organizations collaborated to develop, enhance and combine online services for adolescent and young adults (AYAs) with cancer and their relatives. A dedicated platform for AYAs could bring together different types of information, tools and interactive elements, elevating the experience and efficiency of information access and support.

Objective:

This study aims to (1) describe the collaborative design process used in the development of an online platform for AYAs with cancer, (2) evaluate the experiences with this collaborative design process, and (3) show the developed features within the platform.

Methods:

A quantitative questionnaire was sent out to AYAs and healthcare professionals (HCPs). Stakeholders were actively engaged in three stakeholder consensus meetings, and project management was carried out through monthly design meetings to facilitate coordination and decision-making of the development of the ‘young and cancer’ platform. A focus group was conducted among the project group to evaluate the collaborative design approach. This was analyzed using an inductive thematic approach.

Results:

AYAs reported that they wanted to find age-specific information and digital tools from various organizations converged into one website. Stakeholders were actively engaged and the project group facilitated coordination and decision-making. The ‘young and cancer’ platform consisted of age-specific information content (e.g. validated written text, videos), patient expert experiences (e.g. podcasts, blogs), opportunities to contact peers (e.g. ‘peer finder’, online support groups), healthcare professional on demand, guide for searching HCPs with expertise in treating AYAs and oncology Appstore. Through the evaluation of the development process three themes were identified: value of stakeholder participation, conditions for working with AYAs with lived experience and inter-organizational collaboration.

Conclusions:

A collaborative design approach with various stakeholders and active AYA participation can help to develop an online platform tailored to the needs of the AYA population. Workshops can optimize collaboration between professionals and AYAs in overcoming patient involvement barriers. More research is needed to assess the use and impact of the 'young and cancer' platform, focusing on the evolving needs and needs of underrepresented AYA subgroups. By continually refining the platform to meet AYAs' needs, we aim to maximize its impact and utility.