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Use of data

As part of Guy’s and St Thomas’ NHS Foundation Trust, Evelina London participates in and supports health and social care research. During any research study that you have agreed for your child to participate in, information about your child is collected in order to conduct the study and for analyses. On some occasions information that has already been collected for your child's normal care is then re-used for research purposes.

For more details on the use of information in research please see the Health Research Authority’s website. We have also compiled, in collaboration with our Patient and Public Advisory Group, a list of frequently asked questions about the use of data in research.

How your child's information may be used

What patient information do we keep?

Whenever your child visits the hospital, information is collected about your child and stored in a number of places. This is called an NHS health (also known as medical) record. This includes basic information such as your child's name and address as well as results of any tests, such as blood pressure readings or x-rays. We call all of this information ‘routinely collected’.

How is routinely collected information used in the hospital?

Routinely collected information is used to help medical teams to decide on the best way to look after your child. It is also used to support clinical audits (reviews of a large number of patients’ health records) to help identify ways to improve overall care in the hospital.

Information is also used for a number of other purposes such as national health registries, patient surveys and medical research.

How is your child's information used for medical research?

Researchers use information to increase our understanding of diseases and improve treatment. Before any research is conducted it usually requires approval from an independent ethics committee who will ensure that any patient information is being used ethically and appropriately.

In almost all cases, information is collected for a particular research study in addition to your child's routinely collected information. This information would be kept by individual research teams securely in a special database for that study. For your child to participate in a research study, you will usually be required to provide consent. In most cases, you will be requested to sign a consent form. Any consent forms with your signature and personal details are stored by the research teams in a secure location along with the study information.

Do we keep personal information?

Usually information for research is fully or partially anonymised. Any personal details such as your child's name, address and NHS number are removed and a study reference number is assigned to your child's study information.

Do we use your child's information for research without your consent?

Occasionally some studies will use your child's routinely collected information for research without your consent. For researchers to use any patient information without consent, it must either be completely anonymous to anyone outside of your child's direct care team or the researcher may need to apply for permission from a group called the Confidentiality Advisory Group. This is in line with the UK research governance framework Health Research Ethics Committees: Governance Arrangements.

A list of studies which are approved to do this is available on the Health Research Authority website.

All research involving NHS patients requires approval from the hospital where the research is taking place. This approval is issued by the Research and Development department who ensure that all applicable approvals are in place for the research to commence.

Why do we use routinely collected information?

By using routinely collected information, researchers can conduct data analysis without involving or contacting patients. Researchers can include more patient data which can improve the accuracy of the results, and speed up turning research improvements into care and treatment for patients to experience in clinics.

Will it affect your child's care?

If the information is completely anonymous there will be no way for the researcher to know who your child is and therefore care will not be affected at all.

If the information is partially anonymised and the researcher identifies something in the data about your child which may be important, they are obliged to inform your child's care team.

Do we share your child's information with other organisations?

For some research projects, we share information with other hospitals and vice versa so that we and they have access to even more information. These are called multicentre research studies which help us improve the quality of research by covering a larger section of the population.

Occasionally we will be contracted by a commercial company such as a pharmaceutical company to carry out a research study on their behalf. This may involve testing a new drug or device that they have developed. The information that comes from these studies is given to the company so that they can do things like assess their product’s safety or to help them to market the product. Your consent is usually required to share your child's data with commercial organisations and external organisations.

When we collaborate with private companies, the aim is always to benefit patients and the NHS will receive money for doing so.

We will never share your child's information with insurance companies.

Can you opt out of sharing your child's information?

You have the right to object to the use of your child's information for any purpose other than your child's medical care. If you do this, we will exclude your child's information wherever we can. In some instances we are unable to remove your chlid's data, for example if the data has already been anonymised and released externally or if the information is needed for drug safety data.

You cannot selectively opt out of certain uses of your child's data. If you register an objection your child will be opted out of all uses of their data apart from direct care purposes.

To request a copy of your child's health records, or to register an objection to the Trust using this information for any purpose other than your child's direct care, write to us at:
Information Governance, First Floor South Wing, St Thomas’ Hospital, London SE1 7EH 
Telephone: 020 7188 7525 
Email: subjectaccess@gstt.nhs.uk


Further information

We hope this information has been useful. For any other advice, support or to raise a concern, contact our Patient Advice and Liaison Service.

Telephone: 020 7188 8801

Email: pals@gstt.nhs.uk

For information on the Health Research Authority and the Confidentiality Advisory Group visit the Health Research Authority website.

You can find out more about your information rights on the website of the Information Commissioner’s Office.

To find out more about the research that is carried out at the Biomedical Research Centre at Guy’s and St Thomas’ and King’s College London contact BRCPPI@gstt.nhs.uk. You can also read about some of our latest research online.

Our Biomedical Research Centre are also taking part in some projects looking at the use of patient information.

©  Guy's and St Thomas' NHS Foundation Trust.
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