Practice information sheet

Background

QResearch was established as a new high quality ethical database for research in 2003 by EMIS and Professor Julia Hippisley-Cox who was at the University of Nottingham at the time. The QResearch database, which is now one of the largest of its kind worldwide, consists of the anonymised records of over 35 million patients who have been registered with over 1500 practices spread throughout the UK. Results of research undertaken using QResearch are all published and can be found on the publications page.

 

We have many examples of projects which have helped inform health care policy or enrich understanding of the causes and outcomes from diseases and their treatments. In 2019, QResearch relocated to the University of Oxford in 2019 and then to Queen Mary University of London (QMUL) in 2025 with the move of Professor Hippisley-Cox to QMUL.

 

Why is QResearch wanting to expand?

We want to expand the size of QResearch in order to:

• get better coverage of some parts of the UK (we need at least three practices in a geographical area in order to be able to report at that level)
• increase the number of practices with longitudinal data tracking back over a decade to enable us to develop risk prediction algorithms such as QRISK (http:\\www.qrisk.org)
• enhance our ability to undertake research on rare diseases
• to enable the rapid evaluation of the safety and effectiveness of newly introduced medication.

 

Why has my practice been invited to participate?

We are inviting all practices using EMIS or TPP to take part.

 

Does the practice have to take part?

It is entirely up to the practice as to whether they wish to take part. Practices that agree to take part will activate the QResearch data sharing agreement within their surgery system. The practice will only be included in the project once this activation has been done.

 

What will happen if the practice takes part in QResearch?

The practice system will generate an encrypted upload of patient data and transmit this data to the IM1 platform. Direct identifiers (such as name, NHS number, address, postcode, date of birth and free text) are then immediately and securely removed or transformed by QMUL before data are stored, with exception of date of death which is retained. The NHS number is replaced with a one-way hashed linkage code which cannot be reversed, thereby protecting patient confidentiality. The data are updated on a regular basis and this update does not interfere with the running of the practice or any back-ups.

 

After anonymisation, the data are securely stored in the QResearch database held at QMUL. To ensure maximum security, the data are encrypted and will be stored on very secure servers in the University. Physical access to the database is very restricted. The University is the only point of access to the full database.

 

What data are stored in the QResearch Database?

The QResearch database only stores effectively anonymised coded data within its controlled environment: year of birth, sex, registration dates, date of death, deprivation scores, ethnicity, referrals, consultations, prescriptions, clinical values (e.g. blood pressure), test results (e.g. full blood count) and clinical problems/events such as diagnoses. Patient dates of birth are rounded to year of birth. No free text or strong patient identifiers are stored. Patients whose QResearch opt out code is recorded in the GP extract are excluded from data stored in the QResearch database.  The Type 1 and National Data Opt out are also respected.

 

How does the data linkage work?

The QResearch database is linked to other sources of secondary care data such as cancer registries, births and deaths data, intensive care and hospital episode statistics and maternity data, as well as records of Covid-19 tests and vaccinations. The linked secondary care data are supplied by the NHS England. This information is linked to QResearch using the same anonymisation process which is applied to the NHS number in the secondary data source before the data are released to the University. The data are then linked on the anonym without the need for NHS England to disclose strong identifiers to QResearch. The NHS England retains copyright© of HES data and it is re-used with permission of the NHS England (all rights reserved). 

 

What is the legal basis for processing data?

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 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). The Data Privacy Impact Assessment is here. 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.

 

How do I activate QResearch?

Please click here for instructions on how to activate the upload in your clinical system.

 

Can the practice withdraw from QResearch at any time?

Practices can withdraw from QResearch at any time and without giving a reason. If a practice does decide to withdraw, no further data from the practice will be extracted for future research projects. If a practice wishes to withdraw, it just selects the ‘deactivation’ option from the QResearch agreement in the ‘Information Upload Services’ module within their surgery computer system.

 

What are the benefits of taking part?

Practices will be contributing to the improvement of patient care through a good quality ethical research programme, carried out on large volumes of data. Practices are able to access tools and utilities within their practice system based on research findings from QResearch such as the QRISK, QDiabetes, QFracture and QCancer risk prediction tools. QResearch has been set up on a not-for-profit basis and there is no funding available to cover practice time. However, the amount of time involved in activating the upload is minimal.

 

Are there any risks to taking part?

The main issue is security and confidentiality of the data collected and we have put systems in place to ensure maximum security of data. We have approval from Derby Research Ethics Committee and have consulted widely with professionals with expertise in this area. All information will be held with proper safeguards to ensure confidentiality. As the data are de-identified by QMUL on receipt at the point of extraction, no patient-identifiable information will be stored in the QResearch database.  Patient identifiers will never be released by QResearch. The identity of practices in QResearch will be kept confidential. Although the practice identifiers will be known to EMIS and one member of the QResearch team, no practice-identifiable data will be released by QResearch to a third party. Research uses require approval by the QResearch Scientific Committee under criteria overseen by the QResearch Advisory Board. Under no circumstances will a copy of the entire database be made available to any individual or organisation.

 

Practice notice

CAG have advised us that all practices contributing to QResearch need to display a poster in their waiting rooms and a privacy notice on their website informing patients. Practices may wish to ask their patient advisers which languages the notice should be written in and consider the NHS advice on translation here. The poster can be found here. The privacy notice can be found here.

 

Can patients opt out of their GP data being included in QResearch?

Yes - patients who do not wish their GP data to be included in the upload are able to opt out stating their preference to their GP practice who will record a QResearch specific opt out code (1898191000006104). The Type 1 opt out and National Data Opt out are also respected.

 

What is the Advisory Board and what is its role?

The role of the Advisory Board is:

• To oversee the general working of QResearch including the handling of the data, the type of analyses undertaken and access to the database.
• To agree and update the criteria and principles for access to the QResearch database and oversee their application.
• To advise on policy for accessing data (i.e. how quickly should researchers get data; how much should it cost)
• To offer general advice on professional issues to the QResearch management team
• The full board will represent the key stakeholders in QResearch and to gain and retain the respect of the public, the NHS, practices and the research community. Its membership will include representatives of the following organisations:
• The Royal College of General Practitioners
• The British Medical Association itself and its General Practitioners Committee
• A representative of the practices contributing data to QResearch
• Patient representatives
• Queen Mary University of London

 

What are the requirements for the projects undertaken using QResearch?

Research projects undertaken using the QResearch data will fulfil the following criteria

(a) They have a named principal investigator and named co-investigators (at least one co-investigator will have an academic track record)

(b) They will have a written protocol with a clear research question

(c) They will have current ethical committee approval for the project

(d) They will have a research sponsor and will meet the requirements of research governance

(e) They will agree to acknowledge the source of data in any publication or report (which will never identify any individual practices).

(f) They will guarantee their academic independence, including their ability to publish their findings regardless of the implications for any sponsor or funder

(g) The QResearch Scientific Committee will need to give approval within the guidelines set out by the QResearch Advisory Board before any analysis can occur and before the data can be supplied to the user.

(f) They agree to have a lay summary published on the QResearch website when the project starts

 

Under no circumstances will QResearch data be made available to insurance companies or  pharmaceutical companies for post-marketing surveillance. There may be circumstances in which it is in the public interest to undertake analyses of safety for new and commonly used medications and in these special circumstances it may be necessary for QResearch to have contact with the pharmaceutical industry via a third party such as the MHRA. For example, in a flu pandemic situation we may need to rapidly assess whether a newly developed flu vaccine is likely to be safe and effective. As with any research project however, this will be undertaken by a researcher who can guarantee academic independence in design and analysis as well as freedom to publish in accordance with our governance framework. All studies will be approved by the Scientific Board and notified to the Advisory Board. The protocol for the studies will be publicly available as will any information on funding to support this activity.

 

Will the identity of practices taking part in QResearch be kept confidential?

Yes, the participation of the practice in QResearch will be confidential. The Advisory Board, let alone any users of the QResearch data, will not know the identity of the practice. The practice will not be named in any report or publication.

 

What happens to the results of the research projects?

Results of all projects undertaken using QResearch are made publicly available. We expect researchers who use QResearch data for their research to publish the findings in peer-reviewed journals. We keep a list of all publications, which is available on http://www.QResearch.org 

 

Who is organising the research and who are the guarantors?

The project is organised and guaranteed by Professor Julia Hippisley-Cox, GP and Professor of Clinical Epidemiology (Queen Mary University of London).

 

Further queries

If you have any queries about QResearch, then please contact Professor Julia Hippisley-Cox by email ([email protected]). Further details about QResearch can be found on the QResearch website (www.QResearch.org )

If you have any complaints about the way that QResearch is being conducted, please contact:

Dr Caroline Mitchell, Chair of the QResearch Advisory Board, using the following Email [email protected]

Last updated 26.09.2026