The past decade has witnessed a dramatic increase in the accumulation of data as a result of providing and documenting health and social care. While the use of routinely collected data to understand health conditions is not new, more sophisticated use of routinely collected electronic health records (EHR) is now of interest for evaluating and improving health services in the UK.
The NHS is no exception in the collection of EHR – the analysis of which could contain the key to informing delivery of the best service and provision of the best care possible, as recognised by Chief Medical Information Officer, Professor Sally Davies, through the development of the NIHR Health Informatics Collaborative (NIHR HIC).
NIHR HIC was developed to explore opportunities for more intelligent use of routinely collected data within the NHS through development, design and provision of common infrastructure, standards and services, for the management of routinely collected data in five areas:
- acute coronary syndromes (ACS),
- intensive care,
- ovarian cancer, and
- renal transplantation
These specialty areas were selected both as the emerging health priorities of the NHS, and for the expertise of the nominated centres to pilot this work. To this end NIHR HIC nominated the five comprehensive Biomedical Research Centres (BRCs) within different NHS Trusts to lead the first phase of the project.
Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge are proud to be one of the five BRCs supporting NIHR HIC and leading on the Ovarian Cancer Theme.
Our NIHR HIC partners include:
- Guy’s and St Thomas’ NHS Foundation Trust and King’s College, London (renal transplant theme)
- Imperial College Healthcare NHS Trust and Imperial College, London (ACS theme)
- Oxford University Hospitals NHS Trust and University of Oxford (hepatitis theme)
- University College London Hospitals NHS Foundation Trust and University College, London (intensive care theme)
Value of NIHR HIC
EHR contain information about circumstances, diagnosis, and treatment around a particular condition that are necessary for the delivery and continuity of care of a patient. However, this information, if gathered on a large enough population, could also be used to determine the most efficacious treatments and care pathways for subgroups of people with given health conditions leading to standardisation of the highest quality of care for the whole population. Not only would this improve outcomes of patients, it would also improve efficiency and sustainability by reducing the waiting times and costs of care.
There are however, barriers to sharing EHR for improvement of care.
- Compatibility: Different healthcare facilities and hospitals have different EHR systems and methods of information capture, which means that information may not match up from one electronic record to the next. Fortunately, clinical informatics techniques can be used to harmonise and standardise information after the EHR are collected, such that all organisations can continue to utilise their current systems and share data after standardised processing. NIHR HIC is working to develop a standardised data dictionary (or code of information), such that automated feeds of anonymised information can be collected into one repository.
- Confidentiality: Currently the standard of care for health records, electronic or paper, is to maintain them within the trust where the care was provided. While a standard set of national data are collected and collated from all hospitals, these data provide less detail than necessary to fully understand care pathways and outcomes. All but one of the NIHR HIC projects uses clinical informatics methods to automate the removal of all identifiable information from the medical records before sharing with other centres. The remaining theme (intensive care) has national ethical approval to use identifiable data.
- Collation: As many of the health conditions any one trust manages can be rare in a population and other factors further differentiate cases, it is important to gather information from a larger area in order to inform the best practices.
NIHR HIC has brought together these five BRCs in order to facilitate the data sharing required to make the project work.
Together our five trusts serve a population of 20 million people, providing the numbers needed for service improvement and translational research that will benefit NHS patients.