Information for the public on patient data use

The vast quantity of data produced at UCLH provides an incredible opportunity for us to find out more about different diseases and how to treat them.

If information can be linked up and pooled, researchers and doctors can look for patterns in the data, helping them to develop new ways of predicting, diagnosing and treating illness. For example researchers can look at data to compare people with the same condition and see if there are any patterns in how they were treated and how they progressed. Or researchers can look at large numbers of scans or test results to see if they can find quicker and more accurate ways of analysing results. In this instance, researchers will usually use a computer programme to identify any patterns.

UCLH works in close partnership with UCL and other organisations to conduct this research. This means that staff from UCLH, UCL, and other organisations carrying out research will handle data from the electronic healthcare records.

Data used in research is often anonymised by removing things like names, addresses and dates of birth, and sharing only numbers and statistics. The Understanding patient data website has useful explanations of different levels of depersonalising and anonymising patient data. You can also watch our explainer video embedded to the right.

We are collaborating with research funders, healthcare professionals, data guardians, patient representatives and others as part of Understanding Patient Data and in line with the principles stated at Understanding Patient Data, we support practices that:

  • anonymise data wherever possible
  • grant access to datasets only after an assessment by an independent review committee that the reason for using the data is appropriate
  • provide only the minimum amount of data necessary to answer a research question
  • store data securely
  • require a legal contract to be signed before data can be transferred
  • enable patients and the public to opt-out

We will always seek your consent to use data wherever possible. There may be circumstances when it is not possible to get your consent – for example if you are too ill. In this case, if the research is considered for the public good, we can use your data without your consent but we have to get special permission to do this. In order to get permission, researchers need to be able to show the research is for the public good and that there may be circumstances when it is not possible to get a patient’s consent.

For more information, please refer to the Confidentiality Advisory Group section on the Health Research Authority Website.

Whenever data is used in research we always use as little identifying data as possible. But data is always protected as though it is identifiable data.

We ensure all research has ethical approval to limit any risk to you and your data. We will also carry out a risk assessment to consider what risks there are to you and your data including cyber risks. This means we can protect your data properly, for example by using access control, encryption of data and setting up policies researchers must obey when using data.

A large portion of research is carried out by a partnership of UCLH and UCL. To read more about UCLH’s data protection policy go to the UCLH website

To read more about UCL’s data protection policy go to the UCL website. To read more how NHS organisations must protect data go to the NHS Digital website.

UCLH will use data to help run your health service and more details can be found on the UCLH website.

No. All research needs some kind of grant funding and we will sometimes work with industry. If we develop a tool as a result of our research, this would be what we might sell, not any data.

UCL runs a ‘safe haven’ for data storage. This means the system is independently checked to ensure it is secure.

Yes and you can withdraw your consent at any time – and it will not affect the care you receive. You can also opt out generally from NHS use of your data for research and planning. But neither withdrawing your consent nor opting out prevents you from taking part in a study at a later date. If you withdraw your consent, we may have to keep information about you for audit purposes and to monitor safety.

You can also choose to opt out of any research happening in the NHS – go to the NHS Digital website for more information.

GDPR helps our work and our research because the legislation requires transparency and give us clearer guidance. You can read UCL and UCLH’s privacy notices on how your data is protected and your rights.