Five mental health trusts in England have launched a partnership that aims to revolutionise dementia research in the UK.
Researchers from South London and Maudsley NHS Foundation Trust (SLaM), Oxford Health NHS Foundation Trust, West London Mental Health NHS Trust, Cambridgeshire and Peterborough NHS Foundation Trust and Camden and Islington NHS Foundation Trust will use software developed by the NHS that takes information from patients’ records without revealing sensitive information that could identify them or their carers.
D-CRIS: the Dementia Clinical Record Interactive Search is a world-leading resource that was first developed at the National Institute for Health Research Dementia Biomedical Research Unit at SLaM and the Institute of Psychiatry, King’s College London. It will enable large datasets to be pooled so that research can be conducted at scale, providing investigators with access to one million patient records and enabling them to identify trends in the data and examine why treatments which work for some patients and are not as effective for others.
Electronic Patient Record systems hold a wealth of clinical patient data. D-CRIS transforms this into a pseudonymised database appropriate for research use. This comprises data recorded in coded and structured form, including dates and scores, plus data held in unstructured free text form, for example, within written assessments, progress notes and correspondence.
D-CRIS has received ethical approval from an independent committee outside the trusts, as a safe, secure and confidential information source for research.
Dr Matthew Patrick, SLaM’s chief executive, said: “This is an exciting and ambitious collaboration that builds on CRIS, a resource developed by the NHS for the NHS. It will make the most of patient data held by the NHS, a valuable and rich resource which holds promising potential to enhance the UK’s world-class research and lead to improved patient care.
“D-CRIS software means we can now link information about patients’ conditions directly with their treatment and care, helping to improve their health. For example, for those with schizophrenia, we will be able to identify whether there are some drugs which are associated with less time spent in hospital and have better outcomes for some people. I am looking forward to seeing the results of this collaboration.”
Rudolf Cardinal, clinical lecturer in psychiatry at Cambridge University, explained how D-CRIS can enhance the research process. “D-CRIS allows us to unlock ways of working that would be impossible using information on paper records,” he said. “For example, as part of the project colleagues are investigating trends in the diagnosis of dementia. Using D-CRIS we can look at individual symptom types that are most common.
“The sky is the limit with D-CRIS – we have created a world-leading resource for dementia that will give researchers the clout to spot trends and see what treatments work for some and not for others.”
Steve Shrubb, chief executive of the West London Mental Health NHS Trust, added: “D-CRIS is a powerful tool that allows us to advance our clinical trials work whilst also ensuring that participants receive the highest levels of support. We’re looking forward to the benefits that D-CRIS will bring.
“The system has been developed with extensive service user involvement, and allows us to determine what treatments work for some and not for others. It will also significantly increase available data to researchers and the participation of other NHS organisations will mean that we will have access to much wider, richer data to assess the most effective treatment for dementia.”