QResearch Practice information sheet
In 2003, the
University of Nottingham and EMIS established a new high quality ethical
database for research known as QRESEARCH. This database, which is now the
largest of its kind worldwide, consists of the pseudonymised records of
over 24 million patients who have been registered with over 1300 practices
spread throughout the UK. Results of research undertaken using QRESEARCH are
all published and can be found at http://www.qresearch.org.
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.
Click here to
see an overview of QResearch and related projects.
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 to 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 (new 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
- 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 areat 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 pseudoymised data and transmit this
data via the N3 network to a dedicated server within EMIS. The data
are pseudonymised with a 'one way' hashing algorithm which cannot be reversed
theereby protecting patient confidentiality. The data are updated on a daily
basis and this update does not interfere with the running of the practice or
EMIS undertakes a
secure transmission of the aggregated data to the University of Nottingham . To
ensure maximum security, the data are encrypted and will be stored on a very
secure server in the University of Nottingham. Physical access to the
database is very restricted. The University of Nottingham is the only
point of access to the full database.
What data is uploaded?
uploads pseudonymised coded data: year of birth, sex, registration dates, date
of death, deprivation scores, ethnicity, referrals, consultations,
prescriptions, clinical values (eg blood pressure), test results (eg full blood
count) and clinical problems/events such as diagnoses. Users are
assigned a pseduonymised code. 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 a read code indicating they have opted
out of QResearch (EMISNQOP15) or the Summary Care Record. Any items marked as confidential by the GP are also excluded from the
How does the data
database is be linked to other sources of data such as cancer
registries, deaths data and hospital episode statistics. The linked hospital data (HES), cause of death supplied by the Office of National Statistics and cancer registration data supplied by Public Health England are only available for analysis on site at the University of Nottingham as this is the license condition stipulated by the data suppliers. The HSCIC retains copyright© of HES data and it is re-used with permission of the HSCIC (all rights reserved). This information is
linked to Qresearch using the same pseudonymisation process which is applied to
the NHS number in the secondary data source before the data is released to the
University of Nottingham. The data is then be linked on the pseudonymn
without the need for disclosure of any strong identifiers to QResearch.
How do I activate QRESEARCH in EMIS
Please click here for
instructions on how to activate QResearch in EMIS Web.
Can the practice withdraw from
QRESEARCH at any time?
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
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 QRISK2, QDiabetes, QFracture and QCancer risk prediction tools. In addition, we will try to facilitate any of
our practices who wish to undertake their own research project by discussing
the project with them and providing advice on how to get the submission to the
Scientific Committee ready.
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 Trent Multi-Centre
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 1998 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. Indeminty 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.
Trent Multi-centre 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.
Patients who do not wish their data to be included in the upload are able to
opt out by informing their General Practitioner who then assigns a specific
EMIS Read code (EMISNQOP15) which will cancel any future data collection from that patients’
What is the
Advisory Board and what is its role?
The role of the Advisory Board is:
Ø To oversee the general
working of QRESEARCH including the handling of the data, the type of analyses
undertaken and access to the database.
Ø To agree and update the
criteria and principles for access to the QRESEARCH database and oversee their
Ø To advise on policy for
accessing data (i.e. how quickly should researchers get data; how much should
Ø 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:
Ø The Royal College of General
Ø The British Medical
Association itself and its General Practitioners Committee
Ø EMIS National Users Group
Ø A representative of the
practices contributing data to QRESEARCH
Ø Two patient representatives
Ø University of Nottingham
Ø Chair of the Scientific
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
(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
(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
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, 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
Will the identity
of practices taking part in QRESEARCH be kept confidential?
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
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. We will keep a list of all
publications which is available on http://www.qresearch.org.
Who is organising the research and
who are the guarantors?
QRESEARCH is a
joint venture between the Univeristy of Nottingham and EMIS. The project
is organised and guaranteed by Professor Julia Hippisley-Cox, GP and
professor of General Practice (University of Nottingham) and Dr Shaun
O'Hanlon (Clinical and Development Director, EMIS).
If you have any
queries about QRESEARCH, then please contact Professor Julia Hippisley-Cox
email. 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
Dr Geoff Schrecker
EMIS National User
Group, Suite 15, Enterprise House, Kingsway North, Team Valley, Gateshead, Tyne
& Wear. NE11 0SR