Early Psychosis Informatics into Care [EPICare]: A co-designed protocol for implementing and evaluating a national integrated digital registry and clinical decision support system within early intervention in psychosis services

Abstract

ABSTRACTIntroductionEarly Intervention in Psychosis services are nationally mandated in England to provide multidisciplinary care to people experiencing first-episode psychosis, which disproportionately affects deprived and ethnic minority youth. Quality of service provision varies by region, and people from historically underserved populations have unequal access. In other disease areas, including stroke and dementia, national digital registries coupled with clinical decision support systems have revolutionised delivery of equitable, evidence-based interventions to transform patient outcomes and reduce population-level disparities in care and prognosis. Given psychosis is ranked the third most burdensome mental health condition by the World Health Organization, it is essential that we achieve the same parity of health improvements. Here, we provide details of a co-designed protocol to produce an evidence-based, stakeholder-informed framework for the build, implementation, and evaluation of a national integrated digital registry and clinical decision support system for psychosis, known as EPICare (Early Psychosis Informatics for Care).Methods and AnalysisUsing a participatory co-design framework, we engaged key stakeholders (N∼40-50) across four meetings to establish the parameters and essential features of EPICare and identify factors likely to influence adoption and implementation into routine practice. Stakeholders consisted of organisational, clinical, academic, and patient and public contributors. In collaboration with National Health Service (NHS) informatics teams, we identified how to retrieve key data items from Electronic Health Records and subsequently design the software architecture and data model to create an infrastructure plan for future implementation. Guided by Normalisation Process Theory, data synthesised from observations of stakeholder meetings and individual interviews (n=10) were subject to interpretative qualitative analysis. Finally, a co-designed set of guides were produced to allow for the build, implementation, and evaluation of EPICare in a larger, future study. An inclusive, representative stakeholder group, fully engaged with the future co-development of EPICare, was also established.