EquiLT UK

Equity of access to liver transplantation in the UK: impact of socio-demographic characteristics on registration, organ offering, allocation and transplant outcomes.

Chief investigator: Dr Ji Jade King
Location/Institution: MPhil/PhD study at University College London (UCL)
Funder: NHS Blood and Transplant (NHSBT)
NHSBT research area: Organs and tissues

Summary

Liver disease is a growing problem, and it is one of the top causes of death for people aged 30 to 60 in the UK.

A liver transplant is often the only way to save someone's life when their liver is too damaged, but we want to make sure that everyone who needs a liver transplant has a fair chance to get one, no matter their background or situation.

This study is trying to find out if the healthcare system is fair for everyone and also how the COVID pandemic may have affected access to treatment and patient survival.

What is the goal of this study?

We want to find out if the people who get liver transplants are from all parts of society or if they come from a more privileged group. This will help us understand if the transplant process is fair for everyone and to make changes if the results show it is not.

How will the study answer these questions?

The study will look at information about patients in three phases:

Phase 1

What happens to people on the waiting list? We’ll look at what happens to people waiting for a liver transplant, whether they get one or pass away, and see if their backgrounds (such as age, gender, race, income, etc.) make a difference.

Phase 2

What happens after the transplant? We’ll study how patients do after they get a liver transplant, based on their background, and see what factors increase the chance of surviving, dying or needing another transplant.

Phase 3

Who gets on the waiting list? We’ll check if the people who need a liver transplant are the same people who actually get on the waiting list. This part of the study will only look at patients living in England.

Where do we get the data?

For phase 1 and 2 of the study we’ll use data from NHSBT, which keeps track of patients registered for a liver transplant through something called the UK Transplant Registry (UKTR). For phase 3, we'll also look at hospital data from NHS England, the Cancer Registry and information about people who have died.

All these data will be combined (through "Data Linkage") so we can better understand who needs a liver transplant and if they are registered for one.

Why do we need to link the data?

How are the data linked?

NHS England will create a list of people who may have needed a liver transplant over the past 20 years.

The NHSBT team will send a list of everyone who has been registered for a liver transplant during this time, and the data will be linked.

Importantly, personal details will be used to help link the data, but they will not be retained for analysis. This means no one can tell who is who and the published results will only show generalised data.

Who handles your data and how are they kept safe?

The research team will follow strict rules to protect your personal information, following UK data protection laws. Only two people will have access to your data, and they will use the minimum amount needed for the study. Your data will not be shared with any other organisation or sent outside the UK.

If there's ever a problem with your data being leaked or used improperly, NHSBT's Data Privacy Team will be notified immediately, along with the Health Research Authority.

Data Controller

NHS Blood and Transplant 500, North Bristol Park Filton Bristol BS34 7QH.

Data protection Officer

Eleanor Ward, Data Security Privacy and Records Management.

Email address: eleanor.ward@nhsbt.nhs.uk

Data Custodians and Processors

Dr Ji Jade King, NHSBT Clinical Research Fellow (Principal Investigator).

Email address: jade.king@nhsbt.nhs.uk

Ms Rhiannon Taylor, NHSBT Senior Statistician

How long will the data be kept?

What if you do not want your data to be used?

You can choose not to have your data used in this study using the steps below:

National Opt-Out: If you’ve already opted out of having your NHS data used for research, we won’t use your data. You can also visit the NHS website to opt out, if you have not already
Study-Specific Opt-Out: If you are okay with your NHS data being used for other studies but not this one, you can contact the lead researcher by email at jade.king@nhsbt.nhs.uk and your data will be removed from this study.

However, if you live in England, please be aware that your hospital information is still routinely collected by NHS England and may be included in the analysis without your name (pseudonymised).

If you are not happy with this, you can opt out of NHS data sharing and then opt back in after the study ends. This only applies to people living in England. No hospital data will be used from Scotland, Wales or Northern Ireland.

Additional information

If you wish to find out more about data privacy for the study, use the links below.

For HES-APC data, visit the NHS England website
For UKTR data, visit the NHSBT website

Approval has been requested to the Health Research Authority (HRA) and support was granted from the London South East Research Ethics Committee (REC) on 13 September 2024 and the Confidentiality Advisory Group (CAG) on 26 September 2024. Further approval has been requested in December to review the Study-Specific Opt-Out process.