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Liver Intensive Therapy Unit Research Database

What is the Liver Intensive Therapy Unit (LITU)?

King’s LITU is a unique specialist intensive care unit that opened in 1973. It has cared for a large number of critically ill people with a wide variety of liver diseases. The LITU has been an international leader in the development of care for this often disadvantaged patient group and has been closely involved in the dramatic improvement of clinical outcomes, with a transformation of survival – including pioneering the use of liver transplantation.

What data from the LITU is stored at King’s College Hospital NHS Foundation Trust?

Since opening in 1973, more than 20,000 people with liver disease have been treated at the LITU. Their information is safely stored within the Trust’s secure data network. This information includes details of the sorts of liver problems they had, the treatments they received, and the results of blood and other laboratory tests performed during their admission. This information is used by the team of LITU doctors and nurses (called the ‘Direct Care Team’) to analyse the activity and safety of care delivered. These are routine activities in most Intensive Care Units across the United Kingdom and elsewhere.

How can LITU data be used to help people with liver disease?

As well as using LITU data to analyse the activity and safety of care on our unit, it can also be used for medical research to help people with liver disease treated elsewhere. Worldwide, there are very few sources of this sort of data. At the LITU we treat many patients with liver diseases that are very rarely seen or treated in other hospitals. We can use this data to learn more about the best ways to care for people with these illnesses. Examples of these sorts of research include:

  • Understanding the clinical course of the liver conditions treated at the LITU and the changes seen since 1973 – and how these changes are related to the different treatments used. In this way we can begin to understand what the most effective treatments might be.
  • Using information from measurements of ‘physiology’ (for example heart or breathing rates) and blood tests to identify the best time to use specific treatments such as liver transplantation.
  • ‘Benchmarking’ outcomes for particular liver conditions, allowing comparisons to be made over time and between treating units.

What is the LITU Research Database?

After consulting with people who have been treated in the LITU, we have set up what is known as a ‘Research Database’. In this, we have removed all information that can identify the person the data is from. This ‘de-identified’ data can then be used for specially approved research projects, and the researcher will never know who the data comes from. It remains securely stored within the Trust’s secure data network. Researchers who would like to use this data must apply to a special committee at the Trust. Members of the Direct Care Team and people who have been treated at the LITU decide whether the researchers can have access to the data.

The Trust will keep some identifying information separate from the Research Database so that it can check whether people in the database are alive or have chosen to ‘opt-out’ – please see below for more details. These ‘identifiers’ will not be released to the Research Database or to researchers.

Who has approved the set-up of the LITU Research Database?

As well as consulting with people who have been treated in the LITU, we have taken the advice from independent expert committees – and have had approval from the HSC B Research Ethics Committee. Because the data we want to use is up to 50 years old, and many of the people treated on the LITU will since have died or become untraceable we cannot get individual consent from all of them. We have therefore also sought advice from the Confidentiality Advice Group at the Health Research Authority and they have advised the Secretary of State of Health to give special support for this project – known as ‘Section 251 Approval’. Our use of the data is strictly not for profit, and it is approved for use only for medical research that is in the public interest.

What if I’ve been treated on the LITU and I don’t want my data used (‘opt-out’)?

If you have been cared for on the LITU between 1973 and 2023 and don’t want your data to be included in the LITU Research Database than you can decide to ‘opt-out’. There are two ways to do this.

If you would prefer for your data not to be included in the LITU research database, but are happy for it to be used in other NHS Medical Research you can chose a ‘Project Specific Opt-Out’. To do this please email [email protected] or write to LITU RDB, Institute of Liver Studies, King’s College Hospital, Denmark Hill, London SE5 9RS.

You can also take the ‘National Data Opt-Out’ which means that your data will not be used in LITU or any other research, and just used in the medical care that you receive.

In either case, you do not need to give a reason for opting out. Your care – at King’s or elsewhere – will not be affected by the choice you make.

You can find out more about how patient information can be used in research on the Health Research Authority website and the Trust’s Privacy Notice. If you have any further questions, please email [email protected].