Working together to improve research 

20/05/2015 00:00 
UCLH is part of an exciting new initiative in which five top hospital trusts share routinely collected clinical data to improve patient outcomes and carry out more effective research.

NHS trusts collect vast amounts of clinical information in different settings. But this information is often held in different formats, making it difficult to compare data and find ways of improving healthcare.

The five trusts have formed the National Institute for Health Research Health Informatics Collaboration (HIC) to make sure clinical information is of such a high quality and in suitable format that it can be shared.

By collecting such a large amount of meaningful data, UCLH clinicians and clinical researchers will be able to look at ways of improving patient care and of developing new treatments.

The collaborative was set up to deliver high quality data in five areas: acute coronary syndromes, ovarian cancer, hepatitis, renal transplantation and intensive care.

The five trusts are: University College London Hospitals NHS Foundation Trust, Imperial College Healthcare NHS Foundation Trust, Guy’s & St Thomas’ NHS Foundation Trust, Oxford University Hospitals NHS Trust and Cambridge University Hospitals NHS Foundation Trust.

UCLH is leading on developing standards for the sharing of intensive care data. It is often difficult to know patient outcomes after the patient leaves intensive care. For instance, if clinicians and researchers can understand what happens to different kinds of patients after they have been in intensive care, then they can look at which treatments in intensive care are the most effective in the long term.

UCLH clinicians worked closely with patients and the public while developing the project. Elizabeth Lloyd Dehler, one of the patients who helped researchers, said: “I have been in critical care and feel very comfortable with the idea of my experience being used to help clinical research. I want to leave behind a legacy that will help medical progress and the lives of others. I suppose I know the benefits of critical care and am grateful.”

Dr David Brealey, consultant lead for critical care trials and clinical lead for the HIC at UCLH, said: “This data is unique throughout the world and will be invaluable for patients, clinicians and researchers alike. For the first time we will be able to understand what happens to our critically ill patients when they leave hospital. Patients will be able to understand the likely course of their illness enabling them to make the appropriate decisions based on evidence that is relevant to them and not just on guesswork. Clinicians and researchers will be able to look at the impact of various new treatments or policy changes, not just in the short term but at the arguably more important longer term outcomes."

Click here to see a film explaining how it works

The collection of the data is subject to strict regulations and ethical approvals. Information will automatically be collected unless a patient requests otherwise.

The information is kept securely in what is called a ‘safe haven’. The information is ‘pseudonymised’ by replacing identifiable information with more artificial identifiers, or pseudonyms and the key to reverse this pseudonymisation is held at the haven.

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