In line with the recommendations from our public panel, the SDE will provide transparency regarding the use of NHS data for research.
Our first research project to use the SDE platform will be a new bladder cancer dataset. This new dataset has been uploaded to the SDE, in line with our current interim governance arrangements, as shown in our milestone update. Details about the research and its ambitions are provided in the case study below.
The challenge
Bladder cancer affects approximately 10,000 in the UK every year. Clinical outcomes remain challenging, and improvements have been modest over many decades. However, improved understanding of the biology of the disease, and new experimental treatment options, have renewed optimism in recent years.
Local context
The Wessex SDE is excited to launch ‘Describing Overall Survival and First-Line Treatment Patterns in High-Risk Invasive Urothelial Bladder Carcinoma Post-Resection Patients’ as the first study to use the Pre-release SDE platform. Each year between 100-150 patients are treated at University Hospital Southampton NHS Foundation Trust (UHS). UHS is active in multiple research projects to try to bring about improvements in patient care for bladder cancer.
Bladder cancer is a complex disease. Excellence in diagnosis and care needs multiple teams working together across nursing, urology, medical and clinical oncology, radiology and pathology. This results in very complex and diverse data records across multiple hospital systems that are time consuming to analyse and not well connected.
Delivering the research and benefits to patients
Details from 78 patients are being used in this study, using routinely collected historic data that has been de-identified before it is entered into the SDE.
By bringing together different types of data, from multiple departments, in a single consistent dataset using the SDE, we will be able to analyse the ‘real world’ approaches to patient care taken by our clinical teams. In doing so, we will be able to benchmark our compliance with national gold standard treatment options to ensure that patients are receiving the best care possible.
In addition to highlighting options for immediate changes in patient care pathways, we anticipate that this will allow for new research hypotheses to be generated for future prospective research studies.
Commenting on the milestone, Prof Simon Crabb, Principal Investigator and Medical Oncologist at UHS, said:
“Bladder cancer is a difficult disease to treat effectively, and it requires a cooperative approach across multiple medical specialties. By bringing together the information held at UHS, across complex data systems, we will be able to consider improvements to patient diagnostic and care pathways that we hope will improve on patient outcomes and patient experience. It is really exciting to see the SDE approach starting to unlock this potential which has previously been impossible to harness.”