The care of critically ill patients is challenging; such patients are in life-threatening situations and their condition can sometimes change on a minute-by minute basis. The bedside monitors, life-support equipment, laboratory investigations, imaging and records of therapies generate huge volumes of real-time data that are used to continuously guide treatments as part of these patients’ care.
Critical illness has a high mortality and the aggressive treatments used to keep patients alive can have serious side effects. However, research into the best combinations of treatments and their consequences is difficult as it is often hard to find enough similar patients from which to draw meaningful conclusions. Even with large studies, the chances are that the results may not apply directly to an individual’s exact circumstances because these vary so much. As a result there is still much we do not know about the effects of treatments on the individual or how their critical illness will affect them in the long term.
Fortunately not many people need care in intensive care units, but for those who do understanding how to take care of them for the best long-term outcomes is very important. Combining the data that is routinely collected on patients from many intensive care units is a new way to study critical illness. The data from intensive care is so complex that it is difficult to fully understand, but recent computer techniques for analysing big datasets make this a potentially invaluable resource for understanding critical illness better and for finding the best combinations of treatments.
Purpose of the NIHR HIC intensive care theme
The NIHR HIC intensive care theme, directed by University College London Hospitals NHS Foundation Trust (UCLH), will create a confidential database of clinical data for research. Other intensive care units involved include, our hospital Trust, the Cambridge University Hospitals NHS Foundation Trust (CUH), and Imperial College London Healthcare NHS Trust, Guy’s and St. Thomas’ NHS Foundation Trust and Oxford University Hospital NHS Trust. We aim to;
- Better understand critical illness and the long-term effect of our therapies so we can tailor our treatments to individual patients.
- Improve our understanding of the long-term consequences of critical illness so that we can provide better on-going care once patients leave the hospital.
What this means in practice
Data from all the participating intensive care units is encrypted before being sent to a secure database at University College London where it can be matched with long-term social and health outcomes (e.g. survival, hospitalisations in other facilities or ability to return to employment).
Personal identifiers are needed to do this matching- however these will not leave the secure data store. We will keep your data confidential. The data will only be accessible to the research team for health-research and the data that they see will have all the identifiable information removed and will therefore be anonymous. Personal data will never be shared with a third party.
For intensive care patients at CUH and their families, this means
- Your routinely collected intensive care data (or that of your family member / friend / loved one) and personal identifiers will be sent securely to UCLH.
- Your information, along with information from patients in intensive care at UCLH and other participating sites will be analysed in a secure data environment.
The project, including the use of personal data has been reviewed and granted approval by both the National Research Ethics Committee (http://nres.nhs.uk/) and the Confidentiality Advisory Group (http://www.hra.nhs.uk/resources/confidentiality-advisory-group/).
We have taken great care to ensure confidentiality and would like to obtain data from all patients so that we have a representative sample. However, if you wish to opt out (meaning you do not want your data shared) or feel that a relative / friend who is in intensive care would not want their data shared but is unable to express his/her wishes, you can:
- Speak to your doctor and ask them to make your (or your relative’s /friend’s) wishes to not be included known to Dr Ari Ercole in intensive care (Project representative for CUH).
- Contact the project representative (Dr Ari Ercole at HICITU@addenbrookes.nhs.uk)
- Contact us through our central website (http://www.nihr.ac.uk/about/nihr-hic.htm)
- Write to the overall project lead; Prof Mervyn Singer, NIHR HIC, Wolfson Building, University College London, Gower Street, London. WC1E 6BT
If you have any questions or concerns about this study please contact:
Dr Ari Ercole
University of Cambridge
Department of Medicine
Division of Anaesthesia
Box 157 Addenbrooke’s Hospital
Cambridge CB2 0QQ
the Patient Advice and Liaison Services (PALS)
Box 53, Cambridge University Hospitals, Cambridge Biomedical
Campus, Hills Road, Cambridge, CB2 0QQ
01223 256 170