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QResearch Information for Patients

1. 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.

2. What sort of information is taken from your GP’s computer system?

Patient identifiers (such as name, NHS number, address, postcode and date of birth) are temporarily disclosed securely to QMUL via the IM1 platform at the point of data extraction in order 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).

Only coded medical information (such as blood pressure measurements, diagnoses and prescriptions) is then stored in the database. The free text notes which a GP makes are not included. You cannot be identified from this information.

3. What is this information used for?

The information is used to study patterns of diseases and compare different treatments used. It is also used to discover if, for example, having one type of illness makes people more likely to get another type of illness. It is also used to compare the safety of different types of medicines including medicines which are prescribed in pregnancy. A recent example is a study which has looked different types of the oral contraceptive pill to see which ones have the highest risk of side effects such as blood clots and which have the lowest risk. The long-term nature of many of these studies requires the information received to be kept on QResearch indefinitely.

The information is also linked to information from other sources including hospital, cancer registration, COVID-19 test results (both antibodies and virus), COVID-19 vaccination, blood and transplantation records, congenital abnormalities information, information from the confidential enquiry into maternal deaths, maternity and birth registrations, mortality and occupation from ONS census records. 

QResearch has also been used to develop algorithms, such as QRISK, which calculates a person’s risk of having a heart attack or stroke so that they can lower their risk.  The QCancer tool helps doctors identify patients at risk of cancer early. The QCovid algorithm predicts risk of severe outcomes from COVID-19 such as hospital admission and death, which can be used to identify those at highest risk for prevention measures or interventions including prioritisation for vaccination. The information is never used for insurance purposes.

QResearch is solely used for research purposes where there is a clear research question and where there is a clear public interest in the outcome of the research.

4. Can I choose not to have my data used in this way?

Yes, you can state your preferences either by the National Data Opt Out which is respected, or by asking your GP to apply a ‘type 1’ opt out.

5. 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.

6. 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.

7. 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.

8. Who runs QResearch? 

QResearch is managed by the Chief Medical Officer of EMIS – the company that supplies your GP with their computers – and 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.

9. How is QResearch resourced?

QResearch uses a cost recovery-based costing model to attribute the actual cost of providing QResearch data access between users according to the size and scale of their project. The cost of using QResearch includes:

• pre-application support from the QResearch team 
• provision of support to make an application to the QResearch Scientific Committee 
• support to develop the data specification
• review by the QResearch Scientific Committee
• extraction, manipulation and linkage of data to create the specified dataset
• support to meet the requirements to access the QResearch server
• access to the dataset and agreed software to work with the dataset on the QResearch server for the duration of the project
• operating costs including; fees from our data providers, server software and hardware costs, and server service costs.

10. 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 23.11.2025