Protecting patient data in research - security, storage and consent
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.
How do you protect my data?
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.
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
What else will my data be used for?
UCLH will use data to help run your health service and more details can be found on the Cookie and Privacy page of the UCLH website
Do you sell my data?
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.
How do you store my data?
UCL runs a ‘safe haven’ for data storage. This means the system is independently checked to ensure it is secure.
Can I refuse permission for my data to be used for research purposes?
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
What about GDPR?
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.