JMIR Publications

ABSTRACT

Background:

While patient and public involvement and engagement (PPIE) is now seen as a cornerstone of mental health research, young people’s involvement in PPIE faces limitations. Work and school demands and more limited independence can make it challenging for young people to engage with PPIE. Lack of ability or desire to attend face-to-face meetings or group discussions can further compound this difficulty. The VoiceIn app and digital platform was co-developed by a multidisciplinary team of young people, mental health researchers and software designers and is the first digital tool that enables young people to engage directly with PPIE opportunities via a mobile app.

Objective:

This article describes how VoiceIn was developed through a series of co-design workshops with relevant stakeholders, specifically: (1) how the initial design of VoiceIn was informed and driven by focus groups with young people, mental health professionals and PPIE leads; (2) how VoiceIn was refined through collaboration with the aforementioned stakeholders; (3) the priorities for an app to support PPIE; (4) the key features necessary in the PPIE app; and (5) the recommended next steps in testing and deploying the digital platform.

Methods:

Initial co-design workshops took place with young people, mental health professionals and PPIE leads to identify key features of an app to support PPIE. A series of VoiceIn design prototypes were developed and iterated based on the priorities and preferences of the stakeholders. The MoSCoW prioritisation method was employed throughout the process to identify priorities across the different stakeholder groups.

Results:

Co-design with young people, mental health professionals and PPIE leads supported the successful development and improvement of the VoiceIn app. As a result of this process, key features were identified including allowing for various modes of providing feedback (e.g. polls and comments), reviewing project updates and expressing interests in categories of research. The researcher platform was developed to support multimedia uploads for project descriptions, a jargon detector, a dedicated section for providing project updates, and a visually-appealing, user-friendly design. While all stakeholder groups emphasised the importance of allowing app users to engage with the app in various ways and for there to be ongoing progress updates, group differences were also noticed. Young people expressed a desire for incentives and rewards for engaging with the app (e.g., to post on their public social media profiles), and mental health professionals and PPIE leads prioritised flexibility in describing the project and its PPIE needs.

Conclusions:

A co-design approach was pivotal to the development of the VoiceIn app. This collaborative approach enabled the app to meet the divergent needs of young people, mental health professionals and PPIE leads. This process mirrored the aspirations of PPIE initiatives by co-creating a digital health research tool with key stakeholders.