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QResearch Information for Patients
- What is QResearch?
QResearch is a non-profit-making research database hosted by Queen Mary University of London (QMUL) involving GP practices using either Optum or TPP software.
With the permission of the GP surgery, data are taken from the computer system, sorted, linked to other medical information centrally held by the NHS, then the information is made available to medical researchers.
QResearch is used only for researchers that is in the public interest and aims to improve healthcare, treatments and patient safety.
- What sort of information is taken from your GP’s computer system?
At the point of data extraction, patient identifiers (such as name, NHS number, address, postcode, and date of birth) are temporarily disclosed securely to QMUL via the NHS IM1 platform. This is done only to enable accurate linkage to other national health datasets for research.
QMUL then anonymises your record immediately and irreversibly at the point of extraction, before it is stored in the QResearch database and before it is used for research (with the exception of the full date of death, which is retained where relevant for research).
Only coded medical information is stored in QResearch, such as:
- Diagnoses
- Blood pressure measurements
- Prescriptions
Free-text notes written by your GP are not included.
You cannot be identified from the information held in QResearch.
- What is this information used for?
For example, QResearch has been used to:
- Compare different oral contraceptive pills to understand side-effect risks
- Develop tools such as QRISK (heart attack and stroke risk), QCancer (early cancer detection), and QCovid (risk of severe COVID-19 outcomes)
These tools help doctors make better decisions and improve patient care.
The information may also be securely linked to other health records, including:
- Hospital records
- Cancer registration data
- COVID-19 test and vaccination records
- Birth and death registrations
- Certain national audit and public health datasets
The information is never used for insurance or marketing purposes.
Because many studies look at long-term health outcomes, the information received may be kept in QResearch indefinitely.
- Can I choose not to have my data used in this way?
Yes. You can choose not to have your anonymised GP data used in QResearch.
Opting out of QResearch specifically
If you do not want your information to be used for QResearch:
- Speak to your GP practice
- Your practice can record your preference by applying a QResearch-specific opt-out code to your GP record
- This means your data will not be included in QResearch in the future
The National Data Opt-out and Type 1 opt-out will also be respected.
- Who supplies this information?
The information is supplied from GPs who use the EMIS computer systems. A sample of approximately 1500 GP practices is used (there are approximately 9,800 practices in the UK overall). The database covers a population of over 35 million people over the last 25 years.
- Exactly what information is stored by QResearch?
Only coded anonymised medical information is stored in the QResearch database. No personal details about you are included. The chances you ever be recognised from this data are almost zero. You cannot ever be recognised from the information in QResearch. The GP computer system allocates your information a unique number which allows your records to be linked together without it identifying you.
- How is the information given to researchers?
A: The information is given in the form of tables to researchers who are approved by the QResearch team based at QMUL. Approved researchers are employed by UK universities and the research team always includes at least one medically qualified doctor. No personal information (your name, address etc.) can be given to the researchers because QResearch does not have this information.
- Who runs QResearch?
QResearch is managed by Professor Julia Hippisley-Cox, who is a Professor of Epidemiology and Predictive Medicine at QMUL. QResearch has an Advisory Board made up of medical professionals and patient representatives. The Advisory Board ensures that the system is run ethically and is accountable.
- How is QResearch resourced?
QResearch operates on a cost-recovery basis. Organisations that use QResearch data pay only the real costs of providing the service, including:
- Support for applications and approvals
- Data extraction, linkage, and preparation
- Secure systems and infrastructure
- Ongoing operational costs
QResearch is not-for-profit.
- Where can I get further information?
More detailed information on QResearch and the results of research projects can be obtained from our website: www.qresearch.org or by contacting the QResearch team at [email protected] .
The legal basis for the processing of personal data for QResearch is that it is ‘a task in the public interest’ (article 6(1)(e) General Data Protection Regulation) and Article 9(2)(j) of UK GDPR, which states the processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on the Data Protection Act 2018. This is supported by the University Charter which states research as a purpose of the organisation.
The disclosure of patient identifiers to QMUL via the IM1 platform at the point of extraction without patient consent is supported under section 251 of the NHS Act 2006 following advice from the Confidentiality Advisory Group (CAG) to the Health Research Authority (CAG reference 25/CAG/0147). This is the same process that previously ran within the GP system immediately before data extraction which is no longer possible with the new IM1 platform.
Data protection regulation provides you with control over your personal data and how it is used. Further information about your rights with respect to your personal data is available at https://compliance.admin.ox.ac.uk/individual-rights or by contacting the QResearch team.
If you have further questions or are not happy with the way your data have been handled, you can contact the sponsor: [email protected] or write to Data Protection Officer, Queens’s Building, Mile End Road, London, E1 4NS. You have the right to lodge a complaint with the Information Commissioner’s Office (0303 123 1113 or www.ico.org.uk).
Last updated 19.01.2026