QResearch Practice information sheet

Background

QResearch was established a new high quality ethical database for research in 2003 by EMIS Health and Julia Hippisley-Cox who was at the University of Nottingham at the time. The QResearch database, which is now the largest of its kind worldwide, consists of the anonymised records of over 45 million patients who have been registered with over 1800 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 when Professor Julia Hippisley-Cox moved from Nottingham to take up a post as Professor of Clinical Epidemiology & General Practice at the University of Oxford.

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 new risk prediction algorithms such as QRISK (CVD risk score developed - see http://www.qrisk.org) which can be integrated back into the clinical system
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 Web 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 who agree to take part will activate QResearch 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?

GP computer systems are currently connected to EMIS via the NHSNet for support and patching of system upgrades. EMIS will use this link to first upload key census related variables such as the deprivation score (called the Townsend Score) and a marker of rurality into the patient’s electronic record. These data items will be stored in the patients’ record but will not be available on the patient’s registration screen. The scores are derived from the national census and are linked to the electoral ward or output area in which the patient lives. The scores are used in research to measure or monitor uptake and provision of health services.

The practice system will then generate an upload of the anonymised data and transmit this data via the N3 network to a dedicated server within EMIS. The data are anonymised with a 'one way' hashing algorithm 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.

EMIS undertakes a secure transmission of the aggregated data to the University. To ensure maximum security, the data are encrypted and will be stored on a very secure server 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 is uploaded from the GP system?

QResearch only uploads anonymised coded data: year of birth, sex, registration dates, date of death, deprivation scores, ethnicity, referrals, consultations, prescriptions, users, clinical values (eg blood pressure), test results (eg 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 uploaded. Patients are excluded from the uploads if they have stated their preference via the National Data Opt out website).

How does the data linkage work?

The QResearch database is linked to other sources of data such as cancer registries, deaths data and hospital episode statistics. The linked hospital data (HES), cause of death and cancer registration data supplied by NHS England for patients who have not registered a National Data Opt out. These data are only available for analysis on site at the University as this is the license condition stipulated by the data suppliers. The NHS England retains copyright© of HES data and it is re-used with permission of the NHS England (all rights reserved). 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 is released to the University. The data is then be linked without the need for disclosure of any strong identifiers to QResearch.

How do I activate QResearch in EMIS Web?

Here are instructions on how to activate QResearch in EMIS Web.

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 QRISK3, QCovid 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?

We do not believe there are any significant risks to taking part in QResearch. 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 in accordance with the principles and conditions set out in the Data Protection Act 2018 and with proper safeguards to ensure confidentiality. No patient identifiable information will be extracted from your database and therefore 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 the EMIS and one member of the QResearch team, no practice identifiable data will be released by QResearch to a third party. Indemnity is provided by the University of Nottingham. All types of uses of the data will require the approval of the National Advisory Board. Under no circumstances will a copy of the entire database be made available to any individual or organisation.

Practice Notice

Derby Ethics Committee have advised us that all practices contributing to collection of anonymised data for research need to display a notice in their waiting room informing patients. The notice can be found here. Practices may wish to ask their patient advisers which languages the notice should be written in. Patients are excluded from the uploads if they have stated their preference via the National Data Opt out website).

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 via the National Data Opt out website. NHS England do not apply the National Data Opt Out in accordance with national policies.

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
EMIS National Users Group
A representative of the practices contributing data to QResearch
EMIS Health
Patient representatives
University of Oxford

What are the requirements for the projects undertaken using QResearch?

There are two types of projects that will use QResearch. The first type will be research projects and many of these will require a subset of QResearch to analyse. 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

(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.

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

The second type of project will require tables of data. These morbidity surveys will not require the release of a subset containing patient level data, but just analyses. The results of these analyses will be placed on the QResearch website (www.qresearch.org). Applicants for tabular data will need to be approved by the Advisory Board.

Under no circumstances will QResearch data made available to pharmaceutical companies for post marketing surveillance. There may be circumstances in which is it may be 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 according 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 publically 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. Although the practice identifiers will be known to the EMIS and one member of the QResearch team, no practice identifiable data will be released by QResearch to a third party. The practice will not be named in any report or publication.

What happens to the results of the research projects?

All projects undertaken using QResearch are to be made publically available without charge. We expect researchers who use QResearch data for their research to publish the findings in peer reviewed journals. All list of publications is available on http://www.qresearch.org.

Who is organising the research and who are the guarantors?

QResearch is a joint venture between the University of Oxford and EMIS Health. Professor Julia Hippisley-Cox, GP and Professor of General Practice (University of Oxford) is the Chief Investigator. QResearch has a Management Board as well as an Advisory Board and Science Committee made up of medical professionals and patient representatives. The Advisory Board ensures that the system is run ethically and is accountable.

Further queries

If you have any queries about QResearch, then please contact Professor Julia Hippisley-Cox using the above email or [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

Email: [email protected].

version 1.1, 01.09.2023

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