Empowering citizens and communities to make meaning from mental health service narratives

Introduction: Personal experiences describing the impact of mental health service use (or its absence) have been shared on a substantial scale, including in published narratives, and through systems collecting feedback from service users. Knowledge of collective experiences described in mental health service narratives (MHSN) could be used to create meaningful health service change, but MHSN remain under-used, including due to limited analyst capacity. We believe that empowering citizens to make meaning from MHSN, including through identifying collective experiences, could transform mental health service policy and practice.



Methods: With Rethink Mental Illness, we convened workshops exploring how to empower citizens, attended by people with lived experience of mental illness, organisations who advocate for policy and practice change, organisations who collect service user feedback, and citizen science researchers.



Results: We learnt that enabling citizens to make meaning from MHSN requires careful attention to supportive structures, as MHSN can describe distressing experiences, and citizens may lack knowledge on how to engage with content. We developed a preliminary change model with two central components: 1) mechanisms to elicit, curate, and analyse SU experiences; 2) mechanisms to influence decisions and change mindsets. Citizen may be supported to engage with MHSN through two frames of reference: 1) Utilitarian (using MHSN to identify practical changes to systems that create benefit); 2) Human rights (drawing on collection of MHSN to identify systemic abuses of human rights in mental health treatment). Training will be needed to enable citizens to work withing these frames of reference, and should be designed to provide a residual benefit to citizens. How to aggregate knowledge at scale is a central challenge, particularly given varied access rights for MHSN (from confidential to public).



Conclusion: Enabling citizens to lead the process of making meaning from mental health service narratives is achievable with care and adequate resourcing.