A national digital platform that helps clinicians track information related to early psychosis care has launched in Birmingham, Nottinghamshire and Cambridgeshire.
The Early Psychosis Informatics into Care (EPICare) study is a patient registry platform. Developed by the NIHR’s Mental Health Translational Research Collaboration (MH-TRC), it tracks information related to patient care. EPICare will hold relevant data to help deliver better care to over 2,000 patients living with psychosis.
Every year in England, around 12,000 people experience a first episode of psychosis. Psychosis is a form of severe mental illness that can have long term, and devastating personal, family, and societal impacts. People with psychosis can hear voices, have confused thoughts and lack motivation.
Since 2016, the NHS has provided specialist community services for people with first episode psychosis. However, poor outcomes — including lack of recovery, physical health problems, risk of suicide, and hospital admissions — remain too high. We do not have timely information on which interventions are being offered. Also, it is unknown what works best for populations at highest risk of psychosis and poor outcomes. EPICare uses routinely collected clinical data. The data informs individual, team, and national interventions to improve health and prevent poor outcomes.
The NIHR MH-TRC Mission
The NIHR has invested £63M to date into the NIHR Mental Health Translational Research Collaboration Mission (NIHR MH-TRC Mission). The EPICare study is one of the Mission’s flagship initiatives. Professor Rachel Upthegrove (University of Oxford) the NIHR MH-TRC Chair and Professor James Kirkbride (UCL) lead the EPICare team.
They were initially awarded an NIHR Programme Development Grant to kickstart the project. Subsequently, a £2m Programme Grant for Applied Research (PGfAR) was awarded. The PGfAR award enabled the evaluation of its clinical and cost-effectiveness.
The £141,500 Mental Health Research Initiative Programme Development Grant enabled the team to carry out scoping activities. This was with various stakeholders including clinicians, academics, IT specialists, policy makers, patients and the public. The Programme Grant award has led to the trialling of the platform in five NHS Trusts.
The EPICare platform is live in three major NHS Trusts – Cambridgeshire and Peterborough, Birmingham and Nottinghamshire. There are plans to expand this to Greater Manchester and North London later this year. EPICare is funded and delivered through the NIHR MH-TRC Mission. It has involved various development stages. In less than five years, it has been adopted into the NHS, highlighting EPICare as a success driven by the NIHR MH-TRC Mission.
EPICare will allow clinical teams and researchers to identify blind spots in access to care. It informs patients and clinicians of how much progress a person is making. The automated system reminds users about treatment options. It notifies users of milestones they need to achieve and measures their progress. Comprehensive training sessions for clinicians were delivered on-site by the project team.
The project team worked in collaboration with Patient and Public Involvement and Engagement (PPIE) groups and clinicians. The team created a series of onboarding videos to support user engagement and education.
User testing of EPICare was conducted with both PPIE representatives and clinicians. Feedback gathered during this phase played a crucial role. The feedback informed refinements and enhancements to the platform.
Professor James Kirkbride said:
“EPICare will provide patients, clinicians and services with data-driven insights, to help improve the right offer of treatment to the right person at the right time. Nationally, EPICare will provide the first mental health registry capable of transforming the NHS’ ability to ensure delivery of equitable, patient-focussed care to improve outcomes for people experiencing psychosis”.
Further expansion
The EPICare team is working with NHS and industry partners on a phased national rollout. This initial rollout is to five major NHS Mental Health Trusts. There are discussions with the main electronic health record provider in mental health Trusts to explore opportunities for streamlined integration. This integration could improve the scalability and accessibility of the platform.
Dr Zia Katshu, Lead for the Nottingham site and cognition outcomes, emphasises that:
“EPICare is the product of genuine partnership between people with lived experience of psychosis. A partnership with their families and carers, frontline clinicians, and researchers. It offers, for the first time within Early Intervention in Psychosis (EIP) services, a quick, easy-to-use, and reliable way to assess cognitive functioning – a key factor influencing day-to-day wellbeing, recovery, and quality of life”.
Current EPICare Trusts
The first phase of the rollout of the EPICare platform is currently underway in five NHS Trusts, as follows:
- Birmingham and Solihull Mental Health Foundation Trust
- Nottinghamshire Healthcare Foundation Trust
- Cambridgeshire and Peterborough NHS Foundation Trust
- Greater Manchester Mental Health NHS Foundation Trust
- North London NHS Foundation Trust
Plans are also at an advanced stage to roll out the EPICare platform to Oxford Health NHS Foundation Trust.
For further details about the EPICare platform, please visit www.epicaremh.org.
