Award Title: Early Psychosis Informatics into Care [EPICare]
Funder: Department of Health and Social Care

Abstract: 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.

Lay Abstract: Background   People with psychosis can hear voices, have confused thoughts or poor motivation. They can withdraw from friends and family. There is a national network of Early Intervention in Psychosis (EIP) services to support people with first episode psychosis (FEP) with psychology, vocational support and medication. Psychosis affects over 8000 people for the first time every year in England and people who are poor or from ethnic minorities have a higher chance of developing psychosis. When they do, these groups may find it more difficult to recover, and benefit less from treatments. EIP services already collect data, but it is not currently possible to use this to provide patients or clinical teams with timely information to guide the best treatment or help address disparities in care.   We want to develop a secure, computerised national database that tells patients and staff how much progress each person is making, called EPICare. We will combine it with an artificial intelligence tool called a clinical decision support system (CDSS). EPICare will automatically and securely reminders about evidence-based treatment options and progress. The NHS could use the database to discover if any group is missing out treatments unfairly. This type of data innovation has already helped make stroke and cancer care fairer and better.   To begin EPICare, we need to set up a group of patients and practitioners to tell us what information they need, how to collect data and help the developers check the system will work well.     Aim: To produce guidelines for EPICare to make sure it gives patients, staff and people who plan NHS services the right information at the right time.     Methods: We plan three work packages (WP) to work together:   First, we will bring together a group of 10 people with experience of psychosis from diverse backgrounds. They will be joined by clinical staff, local and national service managers and researchers. They will meet four times to decide what features EPICare should have.   Second, we will work closely with NHS IT teams to identify how to get data safely and accurately from IT systems into EPICare, and to understand how EPICare will work and what it will look like to people using it.   Third, we will study the above activities to understand opportunities and challenges of co-designing a novel intervention, and to identify the factors that are likely to influence future implementation into routine practice.     Anticipated Impact: At the end of 12 months, we will have co-designed a feasible set of guides to allow us to build and test EPICare in a future larger study. We will also have established a diverse and inclusive stakeholder group who are fully engaged with the future co-development of EPICare.

Research Activity Codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health Categories: MENTAL HEALTH