JMIR Publications

ABSTRACT

Background:

Measurement-based care, underpinned by routine outcome monitoring, is widely recognised by mental health clinicians as a valuable approach for improving mental health care. Clinicians acknowledge that systematic feedback can enhance clinical decision-making, while young people are willing to engage in ongoing monitoring when their data are used meaningfully to inform treatment. However, measurement-based care should not be limited to the retrospective use of data to monitor outcomes. Repeated, multidimensional measurement offers a unique opportunity to characterise these trajectories, clarify an individual's stage and pattern of illness, and identify the mechanisms that drive onset, persistence, and progression.

Objective:

This study aimed to co-design and refine a personalised report within a decision support tool and explored how personalised, measurement-based insights can support shared decision-making in youth mental health care.

Methods:

Young people aged 15-30 years with lived experience of mental ill-health were recruited through social media and an established lived experience working group to participate in 2-hour, online, co-design workshops. Workshops explored perceptions of personalised care, shared decision-making, and iterative prototypes of a personalised report designed to communicate individual mental health data and personalised insights to both young people and their mental health clinicians. Prompted discussions and interactive activities were conducted via Zoom and Miro boards and were audio-recorded, transcribed, and analysed using inductive reflexive thematic analysis.

Results:

A total of 32 young people with lived experience participated in a series of five co-design workshops. Most participants were aged 17-25 years (n=22, 68.7%), assigned female sex at birth (n=20, 62.5%), and engaged in study (n=18, 56.2%) and/or employment (n=20, 62.5%). Reflexive thematic analysis generated four themes. Information on my terms reflects young people’s desire for autonomy over how, when, and to what depth they engage with personalised information. Value and trust through clarity and transparency highlights the importance of data privacy, transparency, plain language, and explanatory guidance to support trust and understanding. Help me make it my own captures young peoples’ preferences for contextualising data within personal experiences, goals, and circumstances rather than benchmarking solely against population norms. Understanding empowers me emphasises how personalised insights can increase confidence, self-advocacy, and participation in discussions with clinicians. Collectively, participants viewed the personalised report as a tool to support collaborative treatment planning and rebalance traditional clinician-consumer power dynamics through a shared understanding of their mental health experiences.

Conclusions:

Young people identified that personalised, measurement-based mental health information only becomes empowering when it supports autonomy, fosters understanding, reflects individual experiences, and is embedded within collaborative care processes. Co-designed decision-support tools, such as the personalised report co-designed in this study, have the potential to strengthen youth participation, self-advocacy, and shared decision-making by transforming routinely collected outcome data into accessible, meaningful, and actionable insights.