QResearch Information for Patients and Privacy Notice
1. What is QResearch?
QResearch is a non-profit-making collaboration between the University of Oxford and EMIS (a company which provides computer systems to GP surgeries). With the permission of the GP surgery, QResearch takes data from the computer system, sorts it, links it to other medical information centrally held by the NHS, then makes the information available to medical researchers.
2. What sort of information is taken from your GP’s computer system?
Information is taken from the GP computer system about the illnesses people have had and what treatment the doctor gave them. Before the information is taken, it is ‘de-identified’, which means it has had all the information which might identify a patient stripped off including the name, address, postcode, date of birth etc. Only coded medical information (such as blood pressure measurements, diagnoses and prescriptions) is extracted. 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. 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 anonymised information received to be kept on QResearch indefinitely. The information is also linked to information from other sources including hospital, cancer registration, blood and transplantation records and mortality 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 COVIOD-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. It is not used for automated decision making or profiling
4. Can I choose not to have my data used in this way?
A: Yes, by asking your GP to flag your records with a special code which will prevent the uploads to QResearch. You can find out if your GP surgery is taking part by looking at the surgery website or leaflet. Practices may also display a notice in the waiting room. The code used to prevent uploads is taken from the data dictionary known as SNOMED-CT. Your GP will know the actual code (which is 189819000006104) so this can be recorded in your patient record.
5. Who supplies this information?
The information is supplied from GPs who use the EMIS computer system. 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 over the last 25 years.
6. Exactly what information is sent to QResearch?
Only coded medical information is sent. No personal details about you are ever sent. You cannot ever be recognised from the information sent to QResearch. In fact, it would be against the law for personal or recognisable information to be sent. The GP computer system allocates your information a unique number but the link between you and that number never leaves your GP’s practice.
7. How is the information given to researchers?
The information is given in the form of tables to researchers who are approved by the QResearch team. Approved researchers are employed by UK universities and the 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 Health – the company that supplies your GP with their computers – and Julia Hippisley-Cox, who is Professor of Clinical Epidemiology and General Practice at the University of Oxford. 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. Does anyone profit financially from the use of my information?
No. Apart from the computer technicians and research staff who are paid by the University, no one is paid for their role in QResearch. QResearch reimburses reasonable expenses for members of its advisory board, covering cost of travel and attendance at meetings.
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] or phone +44 (0)1865 287 846
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).
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 has been handled, you can contact the sponsor on 01865 616480 or [email protected] or the University of Oxford’s Information Compliance Team at [email protected]. You have the right to lodge a complaint with the Information Commissioner’s Office (0303 123 1113 or www.ico.org.uk.
Originally drafted by Terence Wiseman, Patient Representative, QResearch Advisory Board
Version 3.5, Last updated 28.01.2021