A project to improve outcomes for patients with early psychosis by developing a digital register, and personal health care recommendation tool has been launched by experts at the University of Birmingham and University College London, with Birmingham Women’s and Children’s NHS Foundation trust.
The aim is to develop a nationwide digital register of all people who experience psychosis for the first time and link that to decision tools that help support clinical decision-making. This register will help to improve treatment options and provide long-term cost savings for the NHS.
Around 8,000 people per year are affected by psychosis for the first time. People with psychosis can hear voices, have confused thoughts or poor motivation. They can also withdraw from friends and family. Some people have a higher chance of developing psychosis, including people from poorer backgrounds and some ethnic minority groups. When they do experience psychosis, they may also find it harder to recover and benefit less from treatments.
A national network called Early Intervention in Psychosis Services delivers care and already collects clinical data on patients, but this is not currently used to provide timely information to guide treatment or help address disparities in care.
Once fully developed, the new psychosis register, called EPICare will combine a secure, computerised, national database with a clinical decision support system (CDSS). EPICare will automatically and securely deliver information about possible treatment options and progress.
Project Co-lead, Rachel Upthegrove, is Professor of Psychiatry and Youth Mental Health in the University of Birmingham’s Institute for Mental Health, and Consultant Psychiatrist for Birmingham Women’s and Children’s NHS Foundation Trust. She said: ‘This database could deliver important and up-to-date information about individuals’ care. Importantly, the NHS could also use this tool to find out if anybody is missing out on treatment unfairly, in the same way that data innovation has made stroke and cancer care fairer and better.’
Co-lead Professor James Kirkbride, at University College London, emphasised ‘that a national psychosis register could transform the lives of people who experience psychosis by allowing clinicians and researchers to make better use of their data to remove unequal access to treatments and provide better information to guide care’
The project is called Early Psychosis Informatics into Care (EPICare), and is funded by the National Institute for Health Research (NIHR) and developed in partnership with the NIHR Translational Research Collaboration and the University of Birmingham’s Youth Advisory Group.
In the first 12 months of the project, the team will engage with stakeholder groups to design the guidelines that will enable EPICare to be built and tested in a larger study.