QResearch Data Linkage Project
University of Nottingham · Academic
Expired The latest version ended on 25 September 2020. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-376367-M5V9H
- Latest version
- v5.6
- Term of latest version
- 26 April 2018 to 25 September 2020
- Start date
- Before 26 September 2017
- Data controller
- Sole Data Controller
- Commercial purposes
- Yes
- Sublicensing
- No
- Files released to date
- 32
Why the data was released
Objective for processing
QResearch is a database of linked medical records that has been used and continues to be used by a variety of research projects undertaken by UK universities, from reviewing the safety of antidepressant medicines to studying factors to predict variations in survival rates for cancer patients.
QResearch has also been used to develop and validate risk prediction algorithms such as QRISK2. QRISK2 can be used by clinicians to calculate an individual’s risk of a heart attack or stroke taking account of their individual risk factors such as age, sex, ethnicity, clinical values and diagnoses. The research describing the derivation and validation of QRISK2 has been published in the BMJ (2008) and the software implementing QRISK2 is available as open and closed source software. QRISK2 is recommended by NICE as the risk score for use in its guidance on lipid modification (2014) and it is also recommended for use in the NHS Health Check.
The HES data are requested to link to the existing QResearch database so that it can be used for medical research. The QResearch database consists of the coded pseudonymised electronic health records from primary care patients registered with approximately 1,000 general practices spread throughout the UK. The QResearch organisation is a not for profit collaboration between the University of Nottingham and EMIS. The database is widely used for medical research into the causes of disease, its natural history, treatment and outcomes. QResearch was started in 2003 in order to improve access for research to primary care data and will continue for the foreseeable future.
In addition to coded data from the GP electronic record, the QResearch database also contains the linked cause of death derived from the death certificate data supplied directly by the Office of National Statistics and cancer registration data supplied directly by Public Health England, following approval by Trent MREC and Secretary of State for Health.
The data linkages for QResearch were extended in 2011 to include additional health information from secondary care including HES. The additional HES linked data enables researchers to analyse additional information on patient characteristics, treatment and outcomes which will improve the epidemiological analyses of studies since the data will be more complete. Without the data linkage, for example, research studies may under-estimate the risk and benefits associated with interventions such as prescribed medicines. For example, QResearch linked to HES is being used to undertake an assessment of different types of direct anticoagulant medication which is prescribed in primary care to reduce risk of stroke and manage thrombosis. Adverse effects from anticoagulants include major haemorrhage which can be life threatening or life ending. Haemorrhage can affect the brain, gastrointestinal tract, urinary track or other parts of the body. The primary care data provides information on the prescriptions issued and the linked HES data provides information on haemorrhage which is serious enough to require hospital admission. Another example is a recent study looking at safety of the oral contraceptive pill. The primary care data provide information on exposure to the medication and the linked HES data provides information on thrombosis. These are just two examples of projects which can only be done using the linked data. The results help identify and quantify the risks and benefits associated with different types of medication, used in different patients, at different doses over time because of the outcomes. The results help doctors and patients make better decisions and increase the evidence base to inform guideline development and policy.
The HES patient level data linked to QResearch is only accessed by academics employed by University of Nottingham, as well as secondees with a contract to process the data. In all cases, data can only be accessed on site at the University of Nottingham. However the researchers involved in a given project (contributing to the research question, design, interpretation and writing of the paper for publication but not handling the data) may be employed by other UK universities. The HES data stays on site at the University of Nottingham and are only handled by University of Nottingham staff, secondees contracted to process the data, and the data processor contracted to the University of Nottingham. The University of Nottingham may have a collaborator at another university on the project team advising on clinical aspects or interpretation of findings, but they will not receive any data. In addition, the external researcher may initiate a project but the analysis will be done by University of Nottingham staff with the data located at the University of Nottingham. Data will not be used for any solely commercial purposes and all applications for the use of HES linked data are subject to a governance process explained in the Processing Activities section.
Only University of Nottingham staff, secondees contracted to process the data for specified purposes, and their data processor will have access to HES record level data and outside researchers will only have access to tabular outputs. HES record level data are not shared with researchers outside of the University of Nottingham. Small numbers are suppressed in line with the ICO guidance.
Research undertaken using the extended database continues to be processed using the existing arrangements with respect to scientific review and annual reports to Trent MREC. Research has to be peer reviewed, original, hypothesis driven or hypothesis testing, intended for publication in an academic peer reviewed journal.
All research undertaken using the QResearch database and linked data are subject to independent peer review and the results of all research are published.
Processing activities
QResearch is a not-for-profit collaboration between the University of Nottingham and EMIS. As part of this collaboration, EMIS process the GP data from the original data controllers (GP practices) and send it to the University of Nottingham.
EMIS is not able to access or process any GP data once it is located at the University of Nottingham.
EMIS is neither a data processor nor a data controller for HES data. EMIS is not able to access any HES data under any circumstances.
Before providing data to the University of Nottingham, NHS Digital use the Open Pseudonymiser tool to pseudonymise the HES data. NHS Digital retains the salt key for this pseudonymisation, meaning that the University of Nottingham are unable to re-identify the data but as described below they are able to link with GP data that was pseudonymised using the same Open Pseudonymiser tool. The University of Nottingham will not be provided with a copy of the pseudonymisation salt.
NHS Digital provide the pseudonymised HES data to the University of Nottingham which is then linked to the QResearch database at individual patient level using a pseudonymised version of the NHS number which has been supplied in both GP data and the HES data. The data linkage is undertaken by an employee of the University of Nottingham. No strong patient identifiers are received by QResearch as the data is pseudonymised-at-source and at NHS Digital. Date of birth is rounded to year of birth before receipt by the University of Nottingham.
The resulting data are then used for undertaking primary research. The linked HES-GP data are only accessed by approved research staff with substantive contracts employed by University of Nottingham, secondees to the University of Nottingham, and the contracted data processor. Data is only processed on site on secure servers at the University of Nottingham. No individual level data will be shared or stored outside the University of Nottingham or supplied to any third party.
Applications for HES data linked to QResearch GP data are restricted to academics employed by University of Nottingham to undertake research. At least one member of the research team must be a medically qualified academic registered with the General Medical Council who signs the guarantee. Eligibility of applications is assessed according to the following criteria.
• You agree NOT to attempt to identify patient(s) or practice(s)?
• You undertake to provide a copy of the final report of the project and copies of any publications within one year of the project completion?
• You agree NOT to release the data to any third party including the funder, sponsor or other such body?
• You agree not to use the data for any other project except that which is expressly described in your protocol
• Do you have a statistician on the project team who has contributed to the design of the study and will advise on the analysis?
• Is the research a benefit to the UK Health and Social care system
All applications are reviewed by the QResearch Scientific Committee, which is overseen by the QResearch Advisory Board (which includes patients and general practice representatives). If an application does not meet the above criteria it would mean that application would be rejected and the data would not be shared. Details of the Scientific Committee and Advisory Board terms of reference and membership are published on the QResearch website, along with Advisory Board minutes.
Researchers originate a research question or hypothesis; write an outline protocol; and contact QRESEARCH to discuss the feasibility of undertaking the study. If the study is feasible, QRESEARCH will give a broad estimate of the costs of providing the analysis and will provide a letter to accompany any application for funding. The researcher then secures the necessary funding and completes the QRESEARCH application form, including a detailed protocol and data specification. This application is sent for scientific review and feedback is given to the researcher. The researcher makes any necessary modifications to the protocol and approval is obtained, the researcher is given a timescale for the analysis. Once the researcher has the analysis, they have to approve it within one month of receipt.
As described in the section above, the QResearch database is also linked to ONS mortality and cancer registration data. The database was first linked to ONS mortality data in 2007 and ONS cancer data in 2011 (subsequently supplied by Public Health England since 2015). The data fields received from ONS mortality data are: pseudonymised NHS number; year of birth, date of death; ICD10 cause of death. The ONS cancer data includes pseudonymised NHS number; sex; year of birth; date of death; diagnosis date; cancer site and type; cancer stage and grade; cancer behaviour; cancer diagnosed only on death certificate; cancer treatment (surgery, hormone, chemotherapy, other).
In theory it would be possible to link additional datasets to the QResearch database though this would require consultation with the QResearch advisory board, the ethics committee, the confidentiality advisory group. It would also require amendment to the data sharing agreement with NHS Digital. There is no requirement to re-identify individuals from the data and no attempts will ever be made to do this.
The data processor Dancing House Consulting undertake IT consultancy on behalf of the data controller, including administration of data backups, database administration, and secure destruction of data. Dancing House Consulting do not undertake data linkage or analysis of HES data. Prior to 2016 this organisation hosted a copy of the pseudonymisation salt but following feedback from NHS Digital improvements were made so that the salt was solely known by the data controllers NHS Digital, EMIS, Public Health England and the Office of National Statistics; an audit process in 2016 confirmed that all other copies of the salt relating to NHS Digital data were destroyed.
Individuals working under appropriate supervision on behalf of the data controller/processor) within this agreement, such as secondees, are subject to the same policies, procedures and sanctions as substantive employees.
All outputs are restricted to aggregate data with small numbers supressed in line with the HES Analysis Guide.
The Data Protection team at the University of Nottingham undertake regular reviews against the ICO code on anonymisation (2012) to ensure that the data remain anonymised and all appropriate controls are in place to minimise any risk of re-identification.
The data from NHS Digital will not be used for any other purpose other than that outlined in this Agreement.
All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).
Expected output
The outputs are research papers which are published in peer reviewer academic scientific journals and presented at academic conferences. All research is published in academic journals with a link from the QResearch website on an ongoing basis. The publications are accompanied by with press releases from the relevant organisations and highlighted on social media.
Examples of conferences include the annual academic conference for the Society of Academic Primary Care ( next due July 2018) and the NIHR School for Primary Care Research (Sept 2017); international conferences such as the North American Primary Care Research Group (NAPCRG- US Nov 2018); the biannual conferences of the EMIS National User Group (a national education and research charity representing the GP practices who contribute data to QResearch Sept 2017, Feb 2018, Sept 2018 etc); annual conferences run by cancer charities such as Macmillan Cancer Support and Pancreatic Cancer UK; local and regional conferences run by the Nottingham Biomedical Research Centre (Dec 2017).
Results are also shared with policy makers and NICE guideline committees on a regular basis via their stakeholder consultations in order to support development of relevant guidelines. For example,
• The results of recent research on cardiovascular risk in people with severe mental health illness were shared in August 2017 with the guideline development group for guideline CG178 entitled “The Psychosis and schizophrenia in adults: prevention and management”.
• The results of work on unplanned admissions was shared with the NICE guideline on multi-morbidity [NG56] to inform its review and update process. This guideline was updated in September 2016 and can be found here. https://www.nice.org.uk/guidance/ng56
• Research on risk assessment for diabetes has fed into recently published NICE guideline on prevention of diabetes (PH38, September 2017) and the update to the ”NHS Health Checks best Practice Guidance” published by Public Health England in February 2017.
• The recent research to update QRISK3 was shared at meetings with the British Heart Foundation and Public Health England as well with the National Directors of Cardiovascular Disease (Huon Grey and Matt Kearney) and at meetings of Expert Scientific Advisory Group which oversees the NHS Health Checks program and which is chaired by John Newton (PHE). QRISK3 will be implemented in the NHS from 2018 and will continue to be updated on regular basis to ensure that the tool gives the most accurate estimation of risk possible.
• Planned research on the risks and benefits of HRT are targeted at the recent NICE guideline on HRT at the next review in 2019. Patient representatives have been involved with the development of the research question and the grant application and will advise on the research as it progresses.
The results of two studies published in the BMJ which described enhanced methods to estimate risk of bleeding (QBleed) and stroke (QStroke) have informed NICE's decision to update their guidelines on atrial fibrillation [CG180]. For more details please see the information published on NICE's website in Sept 2017 on assessment of bleeding and stroke risk https://www.nice.org.uk/guidance/cg180/resources/surveillance-report-2017--atrial-fibrillation-management-2014-nice-guideline-cg180-4597399263/chapter/Surveillance-decision
Results have been shared with the Parliamentary Enquiry into Pancreatic Cancer (JHC attended as an expert witness in 2017).
Results are also regularly shared with patient participants on the QResearch Advisory Board and PPI representatives on individual research projects.
The results tables within the papers will only contain statistical information with cell counts of > 5, being suppressed in line with the ICO code on anonymisation. Outputs will contain aggregate level data with small numbers suppressed in line with the HES analysis guide.
No indicators are produced which show performance of an organisation – indeed the identity of the GP practices contributing to QResearch are not shared with any third party.
Expected measurable benefits
The results of research undertaken continues to result in new knowledge and understanding regarding disease epidemiology, health inequalities, drug safety, methods of identifying patients at high risk of serious illnesses. Every year new research is published in high impact international research journals such as the British Medical Journal and the British Journal of General Practice. The research is ongoing with target dates for individual projects rather than one overall target date.
A complete list of research papers using QResearch database is published at http://www.qresearch.org/SitePages/publications.aspx
Research arising for the QResearch database including the linked data has been used to inform national policy. For example, research findings have been included in NICE guidelines on fragility fracture, diabetes, suspected cancer and lipid modification. Research findings have informed the NHS Health Checks programme and Department of Health guidelines on health checks.
Examples of research include assessment of the safety of antidepressant drugs and novel anticoagulants; investigation of potential links between diabetes drugs and cancer; quantification of the risk of thrombosis associated with various types of the oral contraceptive pill.
Benefits reported so far
The results of research undertaken continues to result in new knowledge and understanding regarding disease epidemiology, health inequalities, drug safety, methods of identifying patients at high risk of serious illnesses. Every year new research is published in high impact international research journals such as the British Medical Journal and the British Journal of General Practice. The research is ongoing with target dates for individual projects rather than one overall target date. A complete list of research papers using QResearch database is published at http://www.qresearch.org/SitePages/publications.aspx
There are many benefits arising from this research - some examples are listed here.
QRISK, which the applicant continues to develop and enhance, has become the preferred cardiovascular risk assessment tool used across the NHS. It is implemented in every GP practice, used extensively in NHS Health Checks, and a variant is used for the NHS Choices 'Heart Age' tool. It was recognised as an outstanding impact case study in the Research Assessment Exercise in 2014. Use of QRISK2 has led to targeted interventions to reduce CVD risk as shown in NHS health check research published in BMJ Open in 2016.
In response to nationally identified NHS needs, the applicant has developed & updated a suite of risk prediction tools to identify patients at high risk of an adverse condition for intervention to improve outcomes. Many of these tools are recommended in policy, NICE guidelines & widely implemented in clinical practice. Examples include three risk assessment tools known as QFracture, QDiabetes and QAdmissions.
1. The QFracture tool which assesses risk of fracture has been recommended in NICE guidelines on fracture prevention (August 2012). It is the preferred tool in the NICE quality standard (2016) & SIGN in Scotland. It was included as a quality indicator within the GP Quality and Outcomes Framework in 2013/4. The tool is integrated in over 4,300 GP practices. It helps identify patients who have a high risk of fracture who can then be offered interventions to reduce their risk of a fracture. This is especially important for elderly patients for whom a osteoporotic fracture can be life changing or life limiting.
2. QDiabetes is recommended by 2012 NICE guidance on diabetes prevention & used to identify patients for the national Diabetes Prevention Programme for interventions to reduce risk of type 2 diabetes. Interventions to reduce diabetes risk will have benefits for the individual patient who may otherwise have developed diabetes. Reducing the incidence of diabetes is also likely to have a wider benefit for the health system given the high work load and costs associated with caring for people with diabetes.
3. Research on identifying patients at high risk of emergency hospital admissions led to the development of the QAdmissions risk assessment tool. This tool is recommended by 2016 NICE guidance on co-morbidity & is used to delivery NHS England's unplanned admissions Designated Enhanced Service by identifying those at high risk of emergency admissions for targeted interventions to reduce their risk of having an emergency admission. This is important since emergency admissions are distressing for the patient and their families but also put strain on the NHS. It will also help GP practices to identify frail older patients as required by the new changes to the 2017 GP contract.
Research into the early diagnosis of cancer was awarded the 2012 Royal College of General Practitioners (RCGP) paper of the year category. It also led to implementation of new risk assessment tool in over 4300 GP practices to improve early diagnosis of cancer, in partnership with Macmillan Cancer Support. It also led to professor Hippisley-Cox becoming an expert witness to the All Party Parliamentary Group on Pancreatic Cancer (2012, 2017) which produced high profile recommendations on how to improve early diagnosis of pancreatic cancer. Patients who are diagnosed with cancer at an earlier stage have a better chance of accessing treatment which is capable of improving survival and quality of life.
Research on the safety of antidepressants has been published in the British Medical Journal and research on how it could be used to improve prescribing decisions for antidepressants in primary care is supported as part of the new NIHR funded Biomedical Research Centre in Nottingham (2017-2022).
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(b)(ii)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Hospital Episode Statistics Accident and Emergency (HES A and E) | Anonymised - ICO Code Compliant | Non-Sensitive | Ongoing | — |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Non-Sensitive | Ongoing | — |
| Hospital Episode Statistics Critical Care (HES Critical Care) | Anonymised - ICO Code Compliant | Non-Sensitive | Ongoing | — |
| Hospital Episode Statistics Outpatients (HES OP) | Anonymised - ICO Code Compliant | Non-Sensitive | Ongoing | — |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to any of the 32 files released under this agreement, across every version. About opt-outs
Files released against version 5.6 of this agreement, summarised by dataset.
| Dataset | Files | First released | Last released | Opt-outs applied |
|---|---|---|---|---|
| Hospital Episode Statistics Admitted Patient Care (HES APC) | 7 | July 2018 | January 2019 | No |
| Hospital Episode Statistics Accident and Emergency (HES A and E) | 3 | July 2018 | January 2019 | No |
| Hospital Episode Statistics Critical Care (HES Critical Care) | 3 | July 2018 | January 2019 | No |
| Hospital Episode Statistics Outpatients (HES OP) | 3 | July 2018 | January 2019 | No |
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions — earlier versions existed before this site's records begin.
DARS-NIC-376367-M5V9H-v5.6 26 April 2018 to 25 September 2020
- Title
- QResearch Data Linkage Project
- Commercial
- Yes
- Sublicensing
- No
- Datasets
- 4
- Files released
- 16
Datasets: Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
What changed from DARS-NIC-376367-M5V9H-v4.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2018-04-26 | |
| Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) | |
| Hospital Episode Statistics Critical Care (HES Critical Care): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) | |
| Hospital Episode Statistics Outpatients (HES OP): legal basis | Health and Social Care Act 2012 – s261(2)(b)(ii) |
Objective for processing
[5 paragraphs unchanged]
The HES patient level data linked to QResearch is only accessed by academics employed by University of Nottingham,
and
as well as secondees with a contract to process the data. In all cases, data can
only
be accessed
on site at the University of Nottingham. However the researchers involved in
[36 words unchanged]
the University of Nottingham and are only handled by University of Nottingham
staff
staff, secondees contracted to process the data,
and the data processor contracted to the University of Nottingham. The University
[77 words unchanged]
are subject to a governance process explained in the Processing Activities section.
Only University of Nottingham
staff
staff, secondees contracted to process the data for specified purposes,
and their data processor will have access to HES record level data
[23 words unchanged]
of Nottingham. Small numbers are suppressed in line with the ICO guidance.
[2 paragraphs unchanged]
Processing activities
[4 paragraphs unchanged]
NHS Digital provide the pseudonymised HES data to the University of Nottingham
[26 words unchanged]
GP data and the HES data. The data linkage is undertaken by
a substantive
an
employee of the University of Nottingham. No strong patient identifiers are received
[15 words unchanged]
rounded to year of birth before receipt by the University of Nottingham.
The resulting data are then used for undertaking primary research. The linked HES-GP data are only accessed by approved research staff with substantive contracts employed by University of
Nottingham
Nottingham, secondees to the University of Nottingham,
and
its
the
contracted data processor. Data is only processed on site on secure servers
[13 words unchanged]
stored outside the University of Nottingham or supplied to any third party.
[12 paragraphs unchanged]
Individuals,
Individuals
working under appropriate supervision on behalf of the data
controller(s)/processor(s)
controller/processor)
within this agreement,
such as secondees,
are subject to the same policies, procedures and sanctions as substantive employees.
[4 paragraphs unchanged]
Unchanged: Expected output, Expected measurable benefits, Benefits reported.
DARS-NIC-376367-M5V9H-v4.2 26 September 2017 to 25 September 2020
- Title
- QResearch Data Linkage Project
- Commercial
- Yes
- Sublicensing
- No
- Datasets
- 4
- Files released
- 6
Datasets: Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
Objective for processing
QResearch is a database of linked medical records that has been used and continues to be used by a variety of research projects undertaken by UK universities, from reviewing the safety of antidepressant medicines to studying factors to predict variations in survival rates for cancer patients.
QResearch has also been used to develop and validate risk prediction algorithms such as QRISK2. QRISK2 can be used by clinicians to calculate an individual’s risk of a heart attack or stroke taking account of their individual risk factors such as age, sex, ethnicity, clinical values and diagnoses. The research describing the derivation and validation of QRISK2 has been published in the BMJ (2008) and the software implementing QRISK2 is available as open and closed source software. QRISK2 is recommended by NICE as the risk score for use in its guidance on lipid modification (2014) and it is also recommended for use in the NHS Health Check.
The HES data are requested to link to the existing QResearch database so that it can be used for medical research. The QResearch database consists of the coded pseudonymised electronic health records from primary care patients registered with approximately 1,000 general practices spread throughout the UK. The QResearch organisation is a not for profit collaboration between the University of Nottingham and EMIS. The database is widely used for medical research into the causes of disease, its natural history, treatment and outcomes. QResearch was started in 2003 in order to improve access for research to primary care data and will continue for the foreseeable future.
In addition to coded data from the GP electronic record, the QResearch database also contains the linked cause of death derived from the death certificate data supplied directly by the Office of National Statistics and cancer registration data supplied directly by Public Health England, following approval by Trent MREC and Secretary of State for Health.
The data linkages for QResearch were extended in 2011 to include additional health information from secondary care including HES. The additional HES linked data enables researchers to analyse additional information on patient characteristics, treatment and outcomes which will improve the epidemiological analyses of studies since the data will be more complete. Without the data linkage, for example, research studies may under-estimate the risk and benefits associated with interventions such as prescribed medicines. For example, QResearch linked to HES is being used to undertake an assessment of different types of direct anticoagulant medication which is prescribed in primary care to reduce risk of stroke and manage thrombosis. Adverse effects from anticoagulants include major haemorrhage which can be life threatening or life ending. Haemorrhage can affect the brain, gastrointestinal tract, urinary track or other parts of the body. The primary care data provides information on the prescriptions issued and the linked HES data provides information on haemorrhage which is serious enough to require hospital admission. Another example is a recent study looking at safety of the oral contraceptive pill. The primary care data provide information on exposure to the medication and the linked HES data provides information on thrombosis. These are just two examples of projects which can only be done using the linked data. The results help identify and quantify the risks and benefits associated with different types of medication, used in different patients, at different doses over time because of the outcomes. The results help doctors and patients make better decisions and increase the evidence base to inform guideline development and policy.
The HES patient level data linked to QResearch is only accessed by academics employed by University of Nottingham, and only on site at the University of Nottingham. However the researchers involved in a given project (contributing to the research question, design, interpretation and writing of the paper for publication but not handling the data) may be employed by other UK universities. The HES data stays on site at the University of Nottingham and are only handled by University of Nottingham staff and the data processor contracted to the University of Nottingham. The University of Nottingham may have a collaborator at another university on the project team advising on clinical aspects or interpretation of findings, but they will not receive any data. In addition, the external researcher may initiate a project but the analysis will be done by University of Nottingham staff with the data located at the University of Nottingham. Data will not be used for any solely commercial purposes and all applications for the use of HES linked data are subject to a governance process explained in the Processing Activities section.
Only University of Nottingham staff and their data processor will have access to HES record level data and outside researchers will only have access to tabular outputs. HES record level data are not shared with researchers outside of the University of Nottingham. Small numbers are suppressed in line with the ICO guidance.
Research undertaken using the extended database continues to be processed using the existing arrangements with respect to scientific review and annual reports to Trent MREC. Research has to be peer reviewed, original, hypothesis driven or hypothesis testing, intended for publication in an academic peer reviewed journal.
All research undertaken using the QResearch database and linked data are subject to independent peer review and the results of all research are published.
Expected output
The outputs are research papers which are published in peer reviewer academic scientific journals and presented at academic conferences. All research is published in academic journals with a link from the QResearch website on an ongoing basis. The publications are accompanied by with press releases from the relevant organisations and highlighted on social media.
Examples of conferences include the annual academic conference for the Society of Academic Primary Care ( next due July 2018) and the NIHR School for Primary Care Research (Sept 2017); international conferences such as the North American Primary Care Research Group (NAPCRG- US Nov 2018); the biannual conferences of the EMIS National User Group (a national education and research charity representing the GP practices who contribute data to QResearch Sept 2017, Feb 2018, Sept 2018 etc); annual conferences run by cancer charities such as Macmillan Cancer Support and Pancreatic Cancer UK; local and regional conferences run by the Nottingham Biomedical Research Centre (Dec 2017).
Results are also shared with policy makers and NICE guideline committees on a regular basis via their stakeholder consultations in order to support development of relevant guidelines. For example,
• The results of recent research on cardiovascular risk in people with severe mental health illness were shared in August 2017 with the guideline development group for guideline CG178 entitled “The Psychosis and schizophrenia in adults: prevention and management”.
• The results of work on unplanned admissions was shared with the NICE guideline on multi-morbidity [NG56] to inform its review and update process. This guideline was updated in September 2016 and can be found here. https://www.nice.org.uk/guidance/ng56
• Research on risk assessment for diabetes has fed into recently published NICE guideline on prevention of diabetes (PH38, September 2017) and the update to the ”NHS Health Checks best Practice Guidance” published by Public Health England in February 2017.
• The recent research to update QRISK3 was shared at meetings with the British Heart Foundation and Public Health England as well with the National Directors of Cardiovascular Disease (Huon Grey and Matt Kearney) and at meetings of Expert Scientific Advisory Group which oversees the NHS Health Checks program and which is chaired by John Newton (PHE). QRISK3 will be implemented in the NHS from 2018 and will continue to be updated on regular basis to ensure that the tool gives the most accurate estimation of risk possible.
• Planned research on the risks and benefits of HRT are targeted at the recent NICE guideline on HRT at the next review in 2019. Patient representatives have been involved with the development of the research question and the grant application and will advise on the research as it progresses.
The results of two studies published in the BMJ which described enhanced methods to estimate risk of bleeding (QBleed) and stroke (QStroke) have informed NICE's decision to update their guidelines on atrial fibrillation [CG180]. For more details please see the information published on NICE's website in Sept 2017 on assessment of bleeding and stroke risk https://www.nice.org.uk/guidance/cg180/resources/surveillance-report-2017--atrial-fibrillation-management-2014-nice-guideline-cg180-4597399263/chapter/Surveillance-decision
Results have been shared with the Parliamentary Enquiry into Pancreatic Cancer (JHC attended as an expert witness in 2017).
Results are also regularly shared with patient participants on the QResearch Advisory Board and PPI representatives on individual research projects.
The results tables within the papers will only contain statistical information with cell counts of > 5, being suppressed in line with the ICO code on anonymisation. Outputs will contain aggregate level data with small numbers suppressed in line with the HES analysis guide.
No indicators are produced which show performance of an organisation – indeed the identity of the GP practices contributing to QResearch are not shared with any third party.
Benefits reported
The results of research undertaken continues to result in new knowledge and understanding regarding disease epidemiology, health inequalities, drug safety, methods of identifying patients at high risk of serious illnesses. Every year new research is published in high impact international research journals such as the British Medical Journal and the British Journal of General Practice. The research is ongoing with target dates for individual projects rather than one overall target date. A complete list of research papers using QResearch database is published at http://www.qresearch.org/SitePages/publications.aspx
There are many benefits arising from this research - some examples are listed here.
QRISK, which the applicant continues to develop and enhance, has become the preferred cardiovascular risk assessment tool used across the NHS. It is implemented in every GP practice, used extensively in NHS Health Checks, and a variant is used for the NHS Choices 'Heart Age' tool. It was recognised as an outstanding impact case study in the Research Assessment Exercise in 2014. Use of QRISK2 has led to targeted interventions to reduce CVD risk as shown in NHS health check research published in BMJ Open in 2016.
In response to nationally identified NHS needs, the applicant has developed & updated a suite of risk prediction tools to identify patients at high risk of an adverse condition for intervention to improve outcomes. Many of these tools are recommended in policy, NICE guidelines & widely implemented in clinical practice. Examples include three risk assessment tools known as QFracture, QDiabetes and QAdmissions.
1. The QFracture tool which assesses risk of fracture has been recommended in NICE guidelines on fracture prevention (August 2012). It is the preferred tool in the NICE quality standard (2016) & SIGN in Scotland. It was included as a quality indicator within the GP Quality and Outcomes Framework in 2013/4. The tool is integrated in over 4,300 GP practices. It helps identify patients who have a high risk of fracture who can then be offered interventions to reduce their risk of a fracture. This is especially important for elderly patients for whom a osteoporotic fracture can be life changing or life limiting.
2. QDiabetes is recommended by 2012 NICE guidance on diabetes prevention & used to identify patients for the national Diabetes Prevention Programme for interventions to reduce risk of type 2 diabetes. Interventions to reduce diabetes risk will have benefits for the individual patient who may otherwise have developed diabetes. Reducing the incidence of diabetes is also likely to have a wider benefit for the health system given the high work load and costs associated with caring for people with diabetes.
3. Research on identifying patients at high risk of emergency hospital admissions led to the development of the QAdmissions risk assessment tool. This tool is recommended by 2016 NICE guidance on co-morbidity & is used to delivery NHS England's unplanned admissions Designated Enhanced Service by identifying those at high risk of emergency admissions for targeted interventions to reduce their risk of having an emergency admission. This is important since emergency admissions are distressing for the patient and their families but also put strain on the NHS. It will also help GP practices to identify frail older patients as required by the new changes to the 2017 GP contract.
Research into the early diagnosis of cancer was awarded the 2012 Royal College of General Practitioners (RCGP) paper of the year category. It also led to implementation of new risk assessment tool in over 4300 GP practices to improve early diagnosis of cancer, in partnership with Macmillan Cancer Support. It also led to professor Hippisley-Cox becoming an expert witness to the All Party Parliamentary Group on Pancreatic Cancer (2012, 2017) which produced high profile recommendations on how to improve early diagnosis of pancreatic cancer. Patients who are diagnosed with cancer at an earlier stage have a better chance of accessing treatment which is capable of improving survival and quality of life.
Research on the safety of antidepressants has been published in the British Medical Journal and research on how it could be used to improve prescribing decisions for antidepressants in primary care is supported as part of the new NIHR funded Biomedical Research Centre in Nottingham (2017-2022).
DARS-NIC-376367-M5V9H-v3.11 26 September 2017 to 25 September 2020
- Title
- QResearch Data Linkage Project
- Commercial
- Yes
- Sublicensing
- No
- Datasets
- 4
- Files released
- 10
Datasets: Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Critical Care (HES Critical Care); Hospital Episode Statistics Outpatients (HES OP)
Objective for processing
QResearch is a database of linked medical records that has been used and continues to be used by a variety of research projects undertaken by UK universities, from reviewing the safety of antidepressant medicines to studying factors to predict variations in survival rates for cancer patients.
QResearch has also been used to develop and validate risk prediction algorithms such as QRISK2. QRISK2 can be used by clinicians to calculate an individual’s risk of a heart attack or stroke taking account of their individual risk factors such as age, sex, ethnicity, clinical values and diagnoses. The research describing the derivation and validation of QRISK2 has been published in the BMJ (2008) and the software implementing QRISK2 is available as open and closed source software. QRISK2 is recommended by NICE as the risk score for use in its guidance on lipid modification (2014) and it is also recommended for use in the NHS Health Check.
The HES data are requested to link to the existing QResearch database so that it can be used for medical research. The QResearch database consists of the coded pseudonymised electronic health records from primary care patients registered with approximately 1,000 general practices spread throughout the UK. The QResearch organisation is a not for profit collaboration between the University of Nottingham and EMIS. The database is widely used for medical research into the causes of disease, its natural history, treatment and outcomes. QResearch was started in 2003 in order to improve access for research to primary care data and will continue for the foreseeable future.
In addition to coded data from the GP electronic record, the QResearch database also contains the linked cause of death derived from the death certificate data supplied directly by the Office of National Statistics and cancer registration data supplied directly by Public Health England, following approval by Trent MREC and Secretary of State for Health.
The data linkages for QResearch were extended in 2011 to include additional health information from secondary care including HES. The additional HES linked data enables researchers to analyse additional information on patient characteristics, treatment and outcomes which will improve the epidemiological analyses of studies since the data will be more complete. Without the data linkage, for example, research studies may under-estimate the risk and benefits associated with interventions such as prescribed medicines. For example, QResearch linked to HES is being used to undertake an assessment of different types of direct anticoagulant medication which is prescribed in primary care to reduce risk of stroke and manage thrombosis. Adverse effects from anticoagulants include major haemorrhage which can be life threatening or life ending. Haemorrhage can affect the brain, gastrointestinal tract, urinary track or other parts of the body. The primary care data provides information on the prescriptions issued and the linked HES data provides information on haemorrhage which is serious enough to require hospital admission. Another example is a recent study looking at safety of the oral contraceptive pill. The primary care data provide information on exposure to the medication and the linked HES data provides information on thrombosis. These are just two examples of projects which can only be done using the linked data. The results help identify and quantify the risks and benefits associated with different types of medication, used in different patients, at different doses over time because of the outcomes. The results help doctors and patients make better decisions and increase the evidence base to inform guideline development and policy.
The HES patient level data linked to QResearch is only accessed by academics employed by University of Nottingham, and only on site at the University of Nottingham. However the researchers involved in a given project (contributing to the research question, design, interpretation and writing of the paper for publication but not handling the data) may be employed by other UK universities. The HES data stays on site at the University of Nottingham and are only handled by University of Nottingham staff and the data processor contracted to the University of Nottingham. The University of Nottingham may have a collaborator at another university on the project team advising on clinical aspects or interpretation of findings, but they will not receive any data. In addition, the external researcher may initiate a project but the analysis will be done by University of Nottingham staff with the data located at the University of Nottingham. Data will not be used for any solely commercial purposes and all applications for the use of HES linked data are subject to a governance process explained in the Processing Activities section.
Only University of Nottingham staff and their data processor will have access to HES record level data and outside researchers will only have access to tabular outputs. HES record level data are not shared with researchers outside of the University of Nottingham. Small numbers are suppressed in line with the ICO guidance.
Research undertaken using the extended database continues to be processed using the existing arrangements with respect to scientific review and annual reports to Trent MREC. Research has to be peer reviewed, original, hypothesis driven or hypothesis testing, intended for publication in an academic peer reviewed journal.
All research undertaken using the QResearch database and linked data are subject to independent peer review and the results of all research are published.
Expected output
The outputs are research papers which are published in peer reviewer academic scientific journals and presented at academic conferences. All research is published in academic journals with a link from the QResearch website on an ongoing basis. The publications are accompanied by with press releases from the relevant organisations and highlighted on social media.
Examples of conferences include the annual academic conference for the Society of Academic Primary Care ( next due July 2018) and the NIHR School for Primary Care Research (Sept 2017); international conferences such as the North American Primary Care Research Group (NAPCRG- US Nov 2018); the biannual conferences of the EMIS National User Group (a national education and research charity representing the GP practices who contribute data to QResearch Sept 2017, Feb 2018, Sept 2018 etc); annual conferences run by cancer charities such as Macmillan Cancer Support and Pancreatic Cancer UK; local and regional conferences run by the Nottingham Biomedical Research Centre (Dec 2017).
Results are also shared with policy makers and NICE guideline committees on a regular basis via their stakeholder consultations in order to support development of relevant guidelines. For example,
• The results of recent research on cardiovascular risk in people with severe mental health illness were shared in August 2017 with the guideline development group for guideline CG178 entitled “The Psychosis and schizophrenia in adults: prevention and management”.
• The results of work on unplanned admissions was shared with the NICE guideline on multi-morbidity [NG56] to inform its review and update process. This guideline was updated in September 2016 and can be found here. https://www.nice.org.uk/guidance/ng56
• Research on risk assessment for diabetes has fed into recently published NICE guideline on prevention of diabetes (PH38, September 2017) and the update to the ”NHS Health Checks best Practice Guidance” published by Public Health England in February 2017.
• The recent research to update QRISK3 was shared at meetings with the British Heart Foundation and Public Health England as well with the National Directors of Cardiovascular Disease (Huon Grey and Matt Kearney) and at meetings of Expert Scientific Advisory Group which oversees the NHS Health Checks program and which is chaired by John Newton (PHE). QRISK3 will be implemented in the NHS from 2018 and will continue to be updated on regular basis to ensure that the tool gives the most accurate estimation of risk possible.
• Planned research on the risks and benefits of HRT are targeted at the recent NICE guideline on HRT at the next review in 2019. Patient representatives have been involved with the development of the research question and the grant application and will advise on the research as it progresses.
The results of two studies published in the BMJ which described enhanced methods to estimate risk of bleeding (QBleed) and stroke (QStroke) have informed NICE's decision to update their guidelines on atrial fibrillation [CG180]. For more details please see the information published on NICE's website in Sept 2017 on assessment of bleeding and stroke risk https://www.nice.org.uk/guidance/cg180/resources/surveillance-report-2017--atrial-fibrillation-management-2014-nice-guideline-cg180-4597399263/chapter/Surveillance-decision
Results have been shared with the Parliamentary Enquiry into Pancreatic Cancer (JHC attended as an expert witness in 2017).
Results are also regularly shared with patient participants on the QResearch Advisory Board and PPI representatives on individual research projects.
The results tables within the papers will only contain statistical information with cell counts of > 5, being suppressed in line with the ICO code on anonymisation. Outputs will contain aggregate level data with small numbers suppressed in line with the HES analysis guide.
No indicators are produced which show performance of an organisation – indeed the identity of the GP practices contributing to QResearch are not shared with any third party.
Benefits reported
The results of research undertaken continues to result in new knowledge and understanding regarding disease epidemiology, health inequalities, drug safety, methods of identifying patients at high risk of serious illnesses. Every year new research is published in high impact international research journals such as the British Medical Journal and the British Journal of General Practice. The research is ongoing with target dates for individual projects rather than one overall target date. A complete list of research papers using QResearch database is published at http://www.qresearch.org/SitePages/publications.aspx
There are many benefits arising from this research - some examples are listed here.
QRISK, which the applicant continues to develop and enhance, has become the preferred cardiovascular risk assessment tool used across the NHS. It is implemented in every GP practice, used extensively in NHS Health Checks, and a variant is used for the NHS Choices 'Heart Age' tool. It was recognised as an outstanding impact case study in the Research Assessment Exercise in 2014. Use of QRISK2 has led to targeted interventions to reduce CVD risk as shown in NHS health check research published in BMJ Open in 2016.
In response to nationally identified NHS needs, the applicant has developed & updated a suite of risk prediction tools to identify patients at high risk of an adverse condition for intervention to improve outcomes. Many of these tools are recommended in policy, NICE guidelines & widely implemented in clinical practice. Examples include three risk assessment tools known as QFracture, QDiabetes and QAdmissions.
1. The QFracture tool which assesses risk of fracture has been recommended in NICE guidelines on fracture prevention (August 2012). It is the preferred tool in the NICE quality standard (2016) & SIGN in Scotland. It was included as a quality indicator within the GP Quality and Outcomes Framework in 2013/4. The tool is integrated in over 4,300 GP practices. It helps identify patients who have a high risk of fracture who can then be offered interventions to reduce their risk of a fracture. This is especially important for elderly patients for whom a osteoporotic fracture can be life changing or life limiting.
2. QDiabetes is recommended by 2012 NICE guidance on diabetes prevention & used to identify patients for the national Diabetes Prevention Programme for interventions to reduce risk of type 2 diabetes. Interventions to reduce diabetes risk will have benefits for the individual patient who may otherwise have developed diabetes. Reducing the incidence of diabetes is also likely to have a wider benefit for the health system given the high work load and costs associated with caring for people with diabetes.
3. Research on identifying patients at high risk of emergency hospital admissions led to the development of the QAdmissions risk assessment tool. This tool is recommended by 2016 NICE guidance on co-morbidity & is used to delivery NHS England's unplanned admissions Designated Enhanced Service by identifying those at high risk of emergency admissions for targeted interventions to reduce their risk of having an emergency admission. This is important since emergency admissions are distressing for the patient and their families but also put strain on the NHS. It will also help GP practices to identify frail older patients as required by the new changes to the 2017 GP contract.
Research into the early diagnosis of cancer was awarded the 2012 Royal College of General Practitioners (RCGP) paper of the year category. It also led to implementation of new risk assessment tool in over 4300 GP practices to improve early diagnosis of cancer, in partnership with Macmillan Cancer Support. It also led to professor Hippisley-Cox becoming an expert witness to the All Party Parliamentary Group on Pancreatic Cancer (2012, 2017) which produced high profile recommendations on how to improve early diagnosis of pancreatic cancer. Patients who are diagnosed with cancer at an earlier stage have a better chance of accessing treatment which is capable of improving survival and quality of life.
Research on the safety of antidepressants has been published in the British Medical Journal and research on how it could be used to improve prescribing decisions for antidepressants in primary care is supported as part of the new NIHR funded Biomedical Research Centre in Nottingham (2017-2022).
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 3 versions: DARS-NIC-376367-M5V9H-v3.11, DARS-NIC-376367-M5V9H-v4.2, DARS-NIC-376367-M5V9H-v5.6
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December 2022
Register-wide edit DARS-NIC-376367-M5V9H-v3.11, DARS-NIC-376367-M5V9H-v4.2, DARS-NIC-376367-M5V9H-v5.6 — Datasets: legal basis: “
s261(1) and” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-376367-M5V9H, “QResearch Data Linkage Project”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-376367-m5v9h/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-376367-M5V9H to see the original rows.