Improving recovery for people with first episode psychosis

Psychosis affects over 8,000 people in England for the first time every year. People with psychosis can hear voices, have confused thoughts and lack motivation. They often withdraw from friends and family.

The risk of developing psychosis is higher in deprived areas and in people from minority backgrounds. People from these backgrounds often find it difficult to recover and benefit less from existing treatments.

Current services and the challenge

There is currently a national network of Early Intervention in Psychosis services. These services support people after their first episode of psychosis via psychological interventions, vocational support and medication. The services collect data on treatments offered and outcomes. However, it is not currently possible to use the data to provide patients or clinical teams with timely information to guide best treatment. It has therefore been challenging to address disparities in access to care, care delivery and outcomes across the country.

Discussions raised via the NIHR Mental Health Translational Research Collaboration (TRC) led to the creation of a national digital psychosis register and clinical decision support system. The system aims to improve recovery for people with first episode psychosis.

The register and database is known as EPICare (Early Psychosis Informatics into Care). It will inform patients and clinicians of how much progress a person is making. The automated system securely reminds users about treatment options, notifies users of milestones needed to achieve and measures their progress.

EPICare will allow clinical teams and researchers to identify blind spots in access to care. They will also be able to identify areas to improve outcomes for people with psychosis. This should help to reduce the disparities in care and prognosis for people with first episode psychosis.

Rachel Upthegrove, Professor of Psychiatry and Youth Mental Health at the University of Birmingham, Consultant Psychiatrist in Early Interventions in Psychosis services, and Chair of the NIHR Mental Health TRC said: “With this representative data, we can potentially move one of the major challenges around Artificial Intelligence in healthcare and precision psychiatry a step forward.”

With the support of the NIHR Mental Health TRC, Professor Upthegrove was successfully awarded an NIHR Programme Development Grant to kickstart the project. The £141,500 Mental Health Research Initiative Programme Development Grant enabled Professor Upthegrove’s team to carry out scoping activities with various stakeholders including clinicians, academics, IT specialists, policy makers, patients and the public. The aim was to determine what core data items would need to be included in the digital registry. It was also necessary for the research team to understand what and how data was currently being collected.

Professor Upthegrove praised the TRC for supporting the development of EPICare and for providing access to a readily available network via the TRC’s Early Psychosis and Data and Digital workstreams. She said: “The NIHR Mental Health TRC has been instrumental in all stages of the EPICare project. As we already had a group of people working together on a common goal, we instantly had collaborators who understood what we wanted to do to develop this. We didn't have to reach out any further to ensure we had representation across the country, as it was already there via the TRC.”

The development of EPICare has involved various stages. The second stage is now funded through the Mental Health Mission which is being delivered through the Mental Health TRC. EPICare is currently being piloted and refined. There are plans for it to be used at the first site at Birmingham Women and Children’s NHS Foundation Trust in May 2024. 6 other sites are planned for deployment through 2025 and 2026. The EPICare team is working with NHS trusts and NHS England to ensure the data can interact with various systems to enable EPICare to ultimately be used as a national platform.