Information for Patients
Q: What is QResearch?
is a non-profit making collaboration between the University of Nottingham
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.
sort of information is taken from your GPs computer system?
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.
Q: What is
this information used for?
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 include 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.
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 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.
Q: Can I choose not to have my data used in this way?
A: yes, by asking you GP to flag your records with a special code which will prevent the uploads to QResearch. The code is EMISNQOP15. 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.
supplies this information?
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 36 million over the last 25 years.
what information is sent to QResearch?
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.
Q: How is
the information given to researchers?
information is given to researchers, who are approved by the QResearch team
based at the University of Nottingham, in the form of tables. 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
is managed by the chief medical officer of EMIS – the company who supplies
your GP with their computers – and a Professor of General Practice at
Nottingham University. 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.
Q: Does anyone
profit financially from the use of my information?
A: No. Apart
from the computer technicians who are paid by Nottingham 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
More detailed information
on QResearch and the results of research projects can be obtained from our
drafted by Terence Wiseman, Patient
Representative, QResearch Advisory Board and last updated August 2015. Last reviewed December 2017