Guy’s and St Thomas’, like almost all NHS organisations, participates in and supports health and social care research. During any research study that you have agreed to participate in, information about you is collected in order to conduct the study and for analyses. On some occasions information that has already been collected for your 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 use of data in research:
How your information may be used
What patient information do you keep?
Whenever you visit the hospital, information is collected about you and stored in a number of places. This is called your NHS health (also known as medical) record. This includes basic information such as your name and address as well as results of any tests, such as your blood pressure readings or results of x-rays. We call all of this information ‘Routinely Collected’.
How is my routinely collected information
used in the hospital?
Routinely collected information is used to help your medical team to decide on the best way to look after you. 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.
Your information is also used for a number of other purposes such as national health registries, patient surveys and medical research.
How is my information used for
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 routinely collected information. This information would be kept by individual research teams securely in a special database for that study. 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 you keep personal information?
Usually information for research is fully or partially anonymised. Any personal details such as your name, address and NHS number are removed and a study reference number is assigned to your study information.
Do you use my information for research
without my consent?
Occasionally some studies will use your 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 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 HRA 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 is it beneficial to 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 the translation of improvements to care and treatment for patients to experience in clinics
Will it affect my care?
If the information is completely anonymous there will be no way for the researcher to know who you are and therefore your care will not be affected at all.
If the information is partially anonymised and the researcher identifies something in the data about you which may be important, they are obliged to inform your care team.
Will you share my 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 multi centre 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 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 information with insurance companies.
Can I opt out of sharing my information?
You have the right to object to the use of your information for any purpose other than your own medical care. If you do this, we will exclude your information wherever we can. In some instances we are unable to remove your data, for example if your data has already been anonymised and released externally or if your information is needed for drug safety data.
You cannot selectively opt out of certain uses of your data. If you register an objection you will be opted out of all uses of your data apart from direct care purposes.
To request a copy of your own health records, or to register an objection to the Trust using your information for any purpose other than your own direct care, write to us at: Information Governance, First Floor South Wing, St Thomas’ Hospital, London SE1 7EH
Telephone: 020 7188 7525
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
For information on the Health Research Authority and the Confidentiality Advisory Group visit https://www.hra.nhs.uk/.
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.