A stakeholder-informed approach to the development and implementation of national digital registry for psychosis: findings from the EPICare platform
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IntroductionEarly Intervention in Psychosis (EIP) services reduce the burden of psychotic disorders, yet significant inequities persist across England in access to NICE‑recommended treatments, provision of psychological therapies, and long‑term outcomes. These disparities are compounded by fragmented electronic health record (EHR) systems, inconsistent data capture, and limited interoperability, preventing routine real‑time evaluation of care quality and effectiveness. The Early Psychosis Informatics into Care (EPICare) programme aims to develop a national learning healthcare system incorporating a standardised core dataset and clinician dashboard to support equitable, data‑driven psychosis care. MethodsOur stakeholder co-design approach comprised three interlinked work packages delivered between 2021 and 2022. Using a participatory co‑design approach, four multi‑stakeholder workshops and preparatory lived‑experience sessions were conducted to identify essential data elements, refine content, and develop dashboard requirements. Stakeholders included people with lived experience, carers, clinicians, informaticians, academics, and policymakers. Parallel informatics work examined EHR systems across five NHS Mental Health Trusts to assess technical feasibility, data maturity, and harmonisation requirements. Implementation research—via interviews and workshop observations—evaluated anticipated barriers and facilitators to future adoption. ResultsConsensus was achieved on a core EPICare dataset including sociodemographic variables, NICE psychosis standard measures, PROMs (DIALOG, GBO, ReQOL), CROMs (HoNOS, symptoms), and longitudinal symptom data. Stakeholders defined key dashboard features such as outcome notifications, treatment reminders, and performance indicators, prioritising usability and alignment with clinical workflow. Substantial variation in Trust‑level data infrastructure informed a flexible technical architecture to mitigate implementation risk. DiscussionOur EPICare stakeholder engagement delivered a co‑designed, technically feasible and nationally scalable specification for a psychosis learning health system, enabling progression to platform development and piloting across five NHS demonstrator Trusts.
