Use of data for research
King’s College Hospital NHS Foundation Trust, like almost all NHS organisations, participates in and supports health and social care research. During any research study that you have agreed to take part 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.
What patient information do you keep?
Whenever you visit the hospital, information is collected about you and stored in a number of secure places. This is called your NHS health record (also known as your medical record). It 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’.
Details of how routinely collected information is used in the hospital are on our patient information page.
How is my information used for medical research?
Researchers use information to increase our understanding of diseases and to improve treatment. Before any research is conducted it usually needs approval from an independent ethics committee, who ensure any patient information is used ethically and appropriately.
If you participate in a specific research study, in most cases you are asked to sign a consent form. The consent form, and a participant information sheet, will describe how your data will be handled during the study. Your signed consent form and your personal details will be stored by the research team in a secure location along with the study information.
Occasionally researchers may use your data without your consent. This requires approval from the Confidentiality Advisory Group.
Additionally, routinely collected information in medical records can also be used to support medical research. At King’s, routinely collected information is anonymised and added to a secure research database called KERRI. Our internal research teams use this anonymised data for research projects aimed at patient and societal benefit.
One way in which this data may be used is by the London Medical Imaging and AI Centre for Value-Based Healthcare. This is a consortium of academic, NHS and industry partners led by King’s College London and based at St Thomas’ Hospital. The AI Centre research teams are training sophisticated AI algorithms from a vast wealth of NHS medical images and patient pathway data to create new healthcare tools to provide faster diagnosis, personalised therapies, and effective screening across a range of conditions and procedures. See the AI Centre website for information on AI Centre studies that are using this data.
The Health Research Authority Research Ethics Committee supports these approaches.
If you wish to opt-out of your data entering this anonymised database, see below on how to opt out.
Patient information is kept for research in line with the UK Data Protection Act 2018 and the EU General Data Protection Regulations 2016 – Article 9 (h) – processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes.
Do you keep personal information?
Because the routinely collected data held in our research database (KERRI) is anonymised, it doesn’t include any personal information such as you name, address, or NHS number.
If you choose to participate in a study, your personal information is usually fully or partially anonymised, and a study reference number is assigned to your study information.
At the end of a research study, personal data collected as part of a study may sometimes have to be archived for legal purposes and each study will have a specific duration it will be archived. The duration of this archiving period is normally on the participant information leaflet of the study.
Can you use my information for research without my consent?
Yes. 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 the Confidentiality Advisory Group (CAG), an independent national body that advises on the use of patient information. This is in line with the UK’s research governance framework.
A list of studies which are approved to use routinely collected information without patient consent 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 hospital’s research department, who ensure that all applicable approvals are in place before the research begins.
Why is it beneficial to use routinely collected information?
It allows researchers to 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 using my information in research 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 you take part in a study where the information is partially anonymised, and the researcher identifies something in the data about you which may be important to your care, they are obliged to inform your care team.
Will you share my information with other organisations?
Yes, in some circumstances. These are described below. We will only do this if you provide consent to share your information in this way.
- For some research projects called multi-centre research studies, we share information with other hospitals, health and social care organisations, universities or research charities. This improves the quality of research by covering a larger section of the population, and by using the specialist skills of people working in other organisations, such as scientists working in universities.
- Occasionally we will be contracted by a commercial company, such as a pharmaceutical company, to carry out a clinical research trial 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 required to share your personal data with commercial organisations.
When we collaborate with private companies, our aim is always to benefit patients and the NHS. We will never share your information with insurance companies without your consent.
Can I opt out of sharing my information?
Yes. You have the right at any time to object to the use of your information for any purpose other than your own direct care. If you do this, we will exclude your information.
You can choose one of two types of opt-out:
- National – opt-out of research and data sharing at a national level. This covers all health and care services in England. See National Data Opt-out Programme.
- Local – to opt-out of your data being used for research at King’s College Hospital NHS Foundation Trust, email [email protected]. Your data may still be shared as part of your normal treatment.
Before you opt out, we recommend you discuss the implications of this with your research team or your care team.
If you take part in a research study, and then change your mind about taking part, all the information we hold will continue to be included, but no further processing of your data will occur.
To request a copy of your patient records see our medical records page.
The following websites have more information about the use of data and research: