Early Psychosis Informatics into Care [EPICare]

Development work questions What are the essential and desirable elements needed for a digital psychosis registry and clinical decision support system (CDSS) developed to improve recovery for people with first episode psychosis (FEP) in Early Intervention Psychosis (EIP) services in England? What informatics challenges need to be addressed?

Background EIP services are nationally mandated to provide multidisciplinary care to people experiencing FEP, which disproportionately affects deprived and ethnic minority youth.

Despite NHS investment in EIP, people from historically underserved populations have unequal access, and only 30-40% achieve full recovery.

Equitable delivery of prompt, personalised targeted treatments, driven by a national digital registry and CDSS would reduce these disparities in care and prognosis.

In other disease areas, like stroke, cancer and dementia, informatics innovation has achieved significant advances; given psychosis is the third most burdensome heath condition, it is essential and just that we achieve the same parity of health improvements.

In this Programme Development Grant, we will complete the first stage of work to ensure onward success of a digital psychosis register and CDSS for early psychosis care (EPICare).

Aims and Objectives Aim: To co-design a framework, protocols and toolkits for onward development, implementation, and evaluation of EPICare.

Objectives: Establish a network with strong public involvement and engagement (PPIE) and other essential stakeholders to identify essential and desirable elements of EPICare and minimize unforeseen challenges (Work Package-WP1).

Address key questions on informatics architecture, infrastructure, governance, and integration to facilitate onward development and testing of EPICare in diverse NHS Trusts (WP2).

Identify implementation factors from the outset, to ensure they are considered in designing, implementing, and sustaining the future deployment of EPICare in a measurable way (WP3) Development Work Plan In WP1, we will use a participatory co-design framework to convene a stakeholder group and establish the parameters and essential features of EPICare.

In WP2, we will work closely with NHS Trust IT teams to identify how key data items can be retrieved from Electronic Health Records (EHRs); design the software architecture and data model and create an infrastructure plan in preparation for future implementation of EPICare.

In WP3, we will investigate opportunities and challenges of co-designing this novel intervention with PPIE, clinical, technologist and organisational stakeholders, and identify factors likely to influence future implementation into routine practice.

Timelines for delivery Month 1-4: Hold first full stakeholder meeting; evaluate national EIP data survey, understand existing EHR data availability, begin consultation meetings with Trust IT teams.

Month 4-9: Two further stakeholder meetings: agree EHR data to be collected; develop IT build protocols, data model and infrastructure toolkits; agree pilot and demonstrator sites.

Month 9-12: Fourth stakeholder meeting; sign-off of proposed EPICare framework, protocols, and toolkits; implementation evaluation of shared decision-making; draft full Program Grant for Applied Research (PGfAR).

Anticipated Impact and Dissemination We will integrate co-designed knowledge from our WPs and draft the framework, protocols, toolkits and PGfAR application for the onward build, pilot, implementation, and evaluation of EPICare. Our stakeholder network will review and sign-off these deliverables.