A Stakeholder-Informed Approach to the Development and Implementation of National Digital Registry and Learning...

Early Intervention in Psychosis services were established throughout England over two decades ago, yet despite aiming to optimise care, less than 40% of patients achieve full clinical recovery and notable inequities persist in accessing NICE-recommended treatments. Fragmented electronic health record systems and limited systematic data capture conceal how disparities in care delivery and effectiveness affect recovery and remission. 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 care.

Our stakeholder co-design approach comprised three interlinked work packages delivered between 2021 and 2022. Using participatory co-design, we conducted four multi-stakeholder workshops and preparatory lived experience sessions with people with lived experience, clinicians, informaticians, academics, and policymakers. We identified essential data elements using adapted "MoSCoW" card sort methodology, refined content, and developed dashboard requirements. Parallel informatics and implementation research assessed technical feasibility, data maturity, and harmonisation requirements and evaluated anticipated barriers and facilitators to future adoption.

Consensus was achieved on core EPICare dataset "must haves" including sociodemographic variables, routine treatment interventions, Patient- and Clinician-Reported Outcome Measures, and longitudinal symptom data. Stakeholders defined key dashboard features, prioritising usability and alignment with clinical workflow. Substantial variation in Trust-level data infrastructure informed flexible technical architecture to mitigate implementation risk.

EPICare stakeholder engagement delivered the blueprint for a co-designed, technically feasible and nationally scalable specification for a psychosis learning healthcare system, enabling progression to platform development and piloting across five Early Intervention in Psychosis services in the NHS.