A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY
Queen Mary University of London · Academic
Expired The latest version ended on 24 August 2022. The September 2026 register still lists the agreement, but its term has passed.
- Reference
- DARS-NIC-15741-J6Y4L
- Latest version
- v3.1
- Term of latest version
- 25 February 2022 to 24 August 2022
- Start date
- 1 February 2019
- Data controller
- Joint Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 1
Data controllers
Why the data was released
Objective for processing
Queen Mary University (QMUL) requires mortality data for use in the study ‘A study to investigate the association between selective uptake of cervical cancer screening and all-cause mortality’.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether women who suffer health problems are less likely to attend cervical cancer screening. The aim of the cervical cancer screening programme is to detect and treat precancerous lesions to avoid the development of cervical cancer. This results in cervical cancer being observed less frequently in women who have attended cervical screening. However it is not clear whether the low risk of being diagnosed with cervical cancer following a normal screening test is due to the screening test alone or whether it also reflects the possibility that those women who attend screening are healthier that those who do not, i.e. they are already at lower risk of cervical cancer than women who do not attend.
To explore whether this phenomenon exists, and its magnitude, the researchers have set up a case/cohort record linkage study involving the screening history of two samples of women. Phase 1 is a sample of women who died between 1992 and 2012 (and were aged 20-69 in 1992) who are described as ‘cases’. Phase 2 is a sample of women who have the same month and year of birth as the women identified in the 'cases', which is described as the ‘cohort’; it is possible that some of the individuals selected randomly into the 'cohort' will be deceased, therefore the 'cohort' will have a mixture of patients who are alive and deceased.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether healthy women are more likely to engage with cervical screening and, if they are, to establish the magnitude of this effect.
The study requires linkage of Civil Registrations mortality data to the cervical cancer screening database (also known as NHAIS).
The maximum estimated sample size of the 'cases' is n=26,850 - it is likely to be less than this because of overlaps in the specific mortality-cause samples and the all-cause mortality sample.
There will be an equal number of women identified by NHAIS in the ‘cohort’.
Therefore the maximum sample size would be n=53,700 - it is likely to be ca. 50,000, both because of the overlap within the 'cases' as described above, and because it is possible that some of the randomly-selected 'cohort' women will also be in the 'cases' group.
NHS Digital provide Civil Registrations mortality data under this Data Sharing Agreement and NHS Digital provide NHAIS cervical screening data under a separate DSA.
QMUL will receive only data that is pseudonymised, and where records have been removed for anyone who has registered a national data opt-out. QMUL will link the pseudonymised datasets using a study unique ID.
QMUL will analyse and report the data.
Queen Mary researchers applied for and secured funding from Cancer Research UK to undertake this work. Cancer Research UK are not involved in processing data or controlling the aims or directions of this study.
The aim of the work is to assess whether those that do not engage with screening are more likely to die (from all-cause mortality and from a list of pre-specified cause specific codes). It has always been hypothesised (but never proven) that women in poor health are less likely to attend cervical screening (and hence more likely to die). Queen Mary researchers aim to find out if this is true and to quantify the magnitude of this effect. The ultimate aim is to use the findings to improve the cervical screening programme.
This is a one-off new study. It is not part of a bigger study, although one other similar study which used Dutch data exists.
The easiest way to find women in poor health is to select women who have died and compare them to women of the same age (at the time of death) who are still alive. Hence, mortality data from England is required, as are cervical screening histories from NHAIS to obtain screening histories for them. By comparing screening histories between both groups of women, the risk of death (overall and cause specific) among those who do and do not attend cervical screening can be estimated.
Hence, QMUL require the following information on women identified by Civil Registrations data:
- Month and Year of Death
- Cause of death (ICD-10)
The study design will be a case-cohort study. The case-cohort design is most useful in analysing time to failure (here mortality) in a large cohort in which failure is rare (mortality from cervical cancer and other HPV related cancers is rare). This is why QMUL need national data rather than regional data.
Screening history information will be collected from all deaths (cases) as well as from a sample (cohort) of women registered in NHAIS with the same month and year of birth as cases. Sampling is done without respect to time or disease status, and, therefore, the design is more flexible than a nested case-control design. Simplistically, one can use the cohort to study all-cause mortality and the case-cohort to study cause-specific mortality.
QMUL are aware that requesting large amounts of detailed data for women can sometimes be challenging as there is great concern for personal data safety. QMUL have selected this study design in an attempt to reduce the number of records necessary while still ensuring sufficient power to observe a difference in mortality between groups. QMUL have additionally applied several filters to ensure they obtain women eligible for screening before death.
QMUL have taken great care to only request the data items that are essential for the study and to minimise the identifiable data requested.
Public Health England (PHE), now NHS England and NHS Improvement (NHSEI), had commissioned NHS Digital to run NHAIS and, since the NHAIS data flows were a core aspect in phase two and PHE were already the data controller for the NHAIS data, NHSEI is a joint Data Controller on this Agreement.
NHSEI and Queen Mary University London are joint Data Controllers under this Agreement. Queen Mary University London also process the data. No other organisations have any say in how the data is used or have any involvement in data processing.
Legal Basis under GDPR
For Queen Mary University London and NHSEI:
Article 6(1)(e): processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
For NHSEI:
Article 9(2)(h): processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3;
For NHSEI:
Article 9(2)(i): processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;
For Queen Mary University London:
Article 9(2)(j): 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 Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
Processing activities
The study design is a case/cohort. The cases will be identified in phase 1 and the cohort in phase 2.
*****Data flows in Phase 1 – ‘Cases’ ****
Step 1. NHS Digital will identify a sample of ‘cases’ (i.e. a sample of deaths between 1992 and 2012 in England (from Civil Registrations (Deaths) dataset) among females born between 1923 and 1972 (and therefore aged 20-69 in 1992) using specific ICD10 causes of death as specified in the Additional Information section, and apply opt-outs. This will be a maximum of 26,850.
a) NHS Digital securely transfers a file of identifiers (NHS number + DOB + Case PseudoID) to NHAIS.
b) NHS Digital securely transfers a de-identified file (Case PseudoID + ICD-10 cause of death + month & year of death) to researchers at QMUL.
Step 2. NHAIS identifies screening histories of individuals within the file from NHS Digital.
c) NHAIS securely transfers a de-identified file (Case PseudoID + month/year of screening test) to QMUL researchers
*****Data flows in Phase 2 - ‘Cohort’*****
NHAIS will identify one woman at random for each case from the cervical screening (NHAIS) database to have the same month and year of birth as each ‘case’ woman - this will constitute the cohort. Note that a 'cohort' member can also be in the ‘case’ sample.
Step 3. Once the ‘cohort’ is identified NHAIS will:
d) securely transfer a file of identifiers (NHS number + DOB + Control PseudoID) to NHS Digital.
e) securely transfer a de-identified file (Control PseudoID + month & year of screening test) to QMUL Researchers
Step 4. NHS Digital identifies any deaths among the ‘cohort’ file provided by NHAIS and applies opt-outs.
f) NHS Digital securely transfers a de-identified file (Control PseudoID + cause of death + month/year of death+ strength of the match (pass 1 to 8)) to QMUL researchers
Data flows are designed to minimise the data shared between NHS Digital and NHAIS (as well as that shared with QMUL).
The direct flow of screening history data from NHAIS to QMUL is covered by a separate Data Sharing Agreement (DSA) (see SD6). The direct flow of mortality data from NHS Digital to QMUL is covered by this DSA. As the two datasets and relevant flows are covered by separate dissemination arrangements the NHS Digital and NHAIS data production teams are content with the data dissemination model detailed below.
Hence the end user files consist of four separate flows made up of:
In Phase 1 ‘Cases’
PseudoFile 1 – contains only screening histories with a unique case ID (sent by NHAIS)
PseudoFile2 - contains only mortality data with a unique case ID (sent by NHS Digital)
In Phase 2 ‘Cohort’
PesudoFile 3 – contains mortality outcomes for ‘cohort’ with a unique cohort ID (sent by NHS Digital)
PesudoFile 4 – contains screening histories for ‘cohort’ with a unique cohort ID (sent by NHAIS)
Researchers at Queen Mary will receive a total of 4 pseudonymised files identified which can be linked by unique case/cohort ID. These separate flows will allow the researchers to identify the ‘cases’ and the ‘cohort’ samples.
***********************************
Data will be stored securely at the Wolfson Institute of Preventive Medicine, QMUL. Charterhouse Square, London EC1M 6BQ which can be remotely accessed via Citrix receiver or physically at Charterhouse Square. Data accessed remotely cannot be copied or emailed.
Data will only be accessed by individuals within the Wolfson Institute of Preventive Medicine who have authorisation by the Institute to access the data for the purpose described, all of whom are substantive employees of Queen Mary University of London.
The 4 data files received will be linked and analysed by researchers from Queen Mary University for the purpose specified here.
Data will not be linked with any other data.
There will be no requirement nor attempt to re-identify individuals from the data.
The data will not be made available to any third parties.
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
An academic paper will be published in a cancer specialist open-access, peer-reviewed journals on risk of death (all cause and cause specific mortality) by attendance to screening by age and screening period.
A simplified version of the findings will be disseminated to charities (Cancer Research UK and Jo's Cervical Cancer Trust [www.jostrust.org.uk]) and published on the Wolfson Institute website.
Based on the publication a short presentation will be developed to summarise the findings for a range of stakeholders, including healthcare professionals and cervical screening policy makers. Findings will be presented at the following events: Public Health England patient outcomes conference, Human Papilloma Virus conference and Eurogin conference.
A close working relationship between researchers at QMUL and cervical screening policy makers already exists.
The aim is to complete the study 6 month after the data has been released to QMUL and publish outputs 3 months later. The original aim was to deliver the peer review manuscript by August 2019, but achieving this will now depend on when the data is released.
Due to the applicant not receiving the data, the output listed above will be delayed.
Output will be published as aggregated level data with small number suppressed, in line with the HES Analysis Guide.
Expected measurable benefits
This research will produce the following benefits to academics studying the effectiveness of screening: inform as to whether current estimates on the effectiveness of cervical cancer screening are overly optimistic and require adjustment, and understanding the role of self-selection in screening; this will enable academics to improve screening programmes.
Having a better understanding of health inequalities will enable policy makers to reduce inequalities.
The benefits should be observed as soon as the outputs are in the public domain (i.e., once they are published or presented at a conference/meeting), This was expected to be around August 2019, although this will be dependent on the date QMUL receives the data.
Due to the applicant not receiving the data, the output listed above will be delayed.
The level of data contained in the outputs from this study will always be aggregate data with small numbers suppressed, in line with the HES Analysis Guide..
The study will produce a comprehensive report on the analysis and results from the data received from NHS Digital - results for publication in a peer review journal will be produced within 9 months of receiving the data. Additionally, the results will be presented to Public Health England at their yearly Cancer Outcomes conference, and directly to the programme leads through the management group for the Audit of invasive cervical cancer (see below). The Cancer Outcomes conference is held every year in or around June (http://www.datascience.manchester.ac.uk/events-1/events/phe-cancer-services-data-and-outcomes-conference-2018/). The research team at QMUL has a yearly meeting with the programme leads at NHSEI through the management group for the case-control study.
A piece on the results from this study will be written for the study cancer prevention blog https://blogs.kcl.ac.uk/cancerprevention/ and results will be promoted through the project's twitter feed. The research will also be submitted to at least one international conference (either Eurogin or International Papilloma Virus conference (IPV)).
The results will be used to adjust statistical outputs from other studies of cervical screening being carried out by the team (and once results are published by other teams working in cervical screening). However, the data is not intended to be used in the development of algorithms, the testing and development of tools or in new technologies.
For over a decade the research group at Queen Mary has been evaluating the cervical screening programme on behalf of Public Health England. The research group runs a case-control study which includes 90% of women diagnosed with cervical cancer and a number of women invited for screening but who do not have cancer. Feedback to the service provider and all of the staff who contribute to the success of the programme is done through an annual report. https://www.qmul.ac.uk/wolfson/research-reports/centre-for-cancer-prevention/nhscsp-audit-of-invasive-cervical-cancer/.
Hence, the researchers at QMUL have established a very strong collaboration with the cervical screening programme.
Benefits reported so far
Due to the applicant not receiving the data, this Data Sharing Agreement has not yet met any of its benefits.
Datasets on the latest version
Legal basis for provision: Health and Social Care Act 2012 - s261 - 'Other dissemination of information'
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death - Secondary Care Cut | Anonymised - ICO Code Compliant | Sensitive | One-Off | Section 251 NHS Act 2006 |
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 applied to the one file released under this agreement. About opt-outs
No files recorded as released under the latest version. 1 was released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 4 versions.
DARS-NIC-15741-J6Y4L-v3.1 25 February 2022 to 24 August 2022
- Title
- A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY
- Commercial
- No
- Sublicensing
- No
- Datasets
- 1
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut
What changed from DARS-NIC-15741-J6Y4L-v2.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2022-02-25 | |
| End date | 2022-08-24 | |
| Civil Registrations of Death - Secondary Care Cut: legal basis | Health and Social Care Act 2012 - s261 - 'Other dissemination of information' |
Data controllers:
+ NHS ENGLAND; + NHS IMPROVEMENT · − PUBLIC HEALTH ENGLAND (PHE)
Objective for processing
[8 paragraphs unchanged]
NHS Digital
will be providing the
provide
Civil Registrations mortality data
(under
under
this
DSA)
Data Sharing Agreement
and NHS Digital
will be providing the
provide
NHAIS cervical screening data
(under
under
a separate
DSA with the Data Controllers NHS England and PHE).
DSA.
[5 paragraphs unchanged]
The easiest way to find women in poor health is to select
[38 words unchanged]
screening histories for them. By comparing screening histories between both groups of
women we can estimate
women,
the risk of death (overall and cause specific) among those who do and do not attend cervical
screening.
screening can be estimated.
Hence, QMUL
would like
require
the following information on women identified by Civil Registrations data:
[2 paragraphs unchanged]
Legal Basis under GDPR:
The study design will be a case-cohort study. The case-cohort design is most useful in analysing time to failure (here mortality) in a large cohort in which failure is rare (mortality from cervical cancer and other HPV related cancers is rare). This is why QMUL need national data rather than regional data.
Screening history information will be collected from all deaths (cases) as well as from a sample (cohort) of women registered in NHAIS with the same month and year of birth as cases. Sampling is done without respect to time or disease status, and, therefore, the design is more flexible than a nested case-control design. Simplistically, one can use the cohort to study all-cause mortality and the case-cohort to study cause-specific mortality.
QMUL are aware that requesting large amounts of detailed data for women can sometimes be challenging as there is great concern for personal data safety. QMUL have selected this study design in an attempt to reduce the number of records necessary while still ensuring sufficient power to observe a difference in mortality between groups. QMUL have additionally applied several filters to ensure they obtain women eligible for screening before death.
QMUL have taken great care to only request the data items that are essential for the study and to minimise the identifiable data requested.
Public Health England (PHE), now NHS England and NHS Improvement (NHSEI), had commissioned NHS Digital to run NHAIS and, since the NHAIS data flows were a core aspect in phase two and PHE were already the data controller for the NHAIS data, NHSEI is a joint Data Controller on this Agreement.
NHSEI and Queen Mary University London are joint Data Controllers under this Agreement. Queen Mary University London also process the data. No other organisations have any say in how the data is used or have any involvement in data processing.
Legal Basis under GDPR
For Queen Mary University London and NHSEI:
[1 paragraph unchanged]
For NHSEI:
[1 paragraph unchanged]
For NHSEI:
[1 paragraph unchanged]
For Queen Mary University London:
[1 paragraph unchanged]
Processing activities
[31 paragraphs unchanged]
The study design will be a case-cohort study. The case-cohort design is most useful in analysing time to failure (here mortality) in a large cohort in which failure is rare (mortality from cervical cancer and other HPV related cancers is rare). This is why QMUL need national data rather than regional data.
Screening history information will be collected from all deaths (cases) as well as from a sample (cohort) of women registered in NHAIS with the same month and year of birth as cases. Sampling is done without respect to time or disease status, and, therefore, the design is more flexible than a nested case-control design. Simplistically, one can use the cohort to study all-cause mortality and the case-cohort to study cause-specific mortality.
QMUL are aware that requesting large amounts of detailed data for women can sometimes be challenging as there is great concern for personal data safety. QMUL have selected this study design in an attempt to reduce the number of records necessary while still ensuring sufficient power to observe a difference in mortality between groups. QMUL have additionally applied several filters to ensure they obtain women eligible for screening before death.
QMUL have taken great care to only request the data items that are essential for the study and to minimise the identifiable data requested.
[1 paragraph unchanged]
Expected measurable benefits
[2 paragraphs unchanged]
The benefits should be observed as soon as the outputs are in the public domain
(i.e.
(i.e.,
once they are published or presented at a conference/meeting), This was expected
[5 words unchanged]
although this will be dependent on the date QMUL receives the data.
[2 paragraphs unchanged]
The study will produce a comprehensive report on the analysis and results
[76 words unchanged]
team at QMUL has a yearly meeting with the programme leads at
PHE
NHSEI
through the management group for the case-control study.
A piece on the results from this study will be written for
[9 words unchanged]
be promoted through the project's twitter feed. The research will also be
submited
submitted
to at least one international conference (either Eurogin or International Papilloma Virus conference (IPV)).
[3 paragraphs unchanged]
Unchanged: Expected output, Benefits reported.
DARS-NIC-15741-J6Y4L-v2.2 1 August 2020 to 31 January 2021
- Title
- A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; Civil Registrations of Death - Secondary Care Cut
What changed from DARS-NIC-15741-J6Y4L-v1.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-08-01 | |
| End date | 2021-01-31 |
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.
Objective for processing
Queen Mary University (QMUL) requires mortality data for use in the study ‘A study to investigate the association between selective uptake of cervical cancer screening and all-cause mortality’.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether women who suffer health problems are less likely to attend cervical cancer screening. The aim of the cervical cancer screening programme is to detect and treat precancerous lesions to avoid the development of cervical cancer. This results in cervical cancer being observed less frequently in women who have attended cervical screening. However it is not clear whether the low risk of being diagnosed with cervical cancer following a normal screening test is due to the screening test alone or whether it also reflects the possibility that those women who attend screening are healthier that those who do not, i.e. they are already at lower risk of cervical cancer than women who do not attend.
To explore whether this phenomenon exists, and its magnitude, the researchers have set up a case/cohort record linkage study involving the screening history of two samples of women. Phase 1 is a sample of women who died between 1992 and 2012 (and were aged 20-69 in 1992) who are described as ‘cases’. Phase 2 is a sample of women who have the same month and year of birth as the women identified in the 'cases', which is described as the ‘cohort’; it is possible that some of the individuals selected randomly into the 'cohort' will be deceased, therefore the 'cohort' will have a mixture of patients who are alive and deceased.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether healthy women are more likely to engage with cervical screening and, if they are, to establish the magnitude of this effect.
The study requires linkage of Civil Registrations mortality data to the cervical cancer screening database (also known as NHAIS).
The maximum estimated sample size of the 'cases' is n=26,850 - it is likely to be less than this because of overlaps in the specific mortality-cause samples and the all-cause mortality sample.
There will be an equal number of women identified by NHAIS in the ‘cohort’.
Therefore the maximum sample size would be n=53,700 - it is likely to be ca. 50,000, both because of the overlap within the 'cases' as described above, and because it is possible that some of the randomly-selected 'cohort' women will also be in the 'cases' group.
NHS Digital will be providing the Civil Registrations mortality data (under this DSA) and NHS Digital will be providing the NHAIS cervical screening data (under a separate DSA with the Data Controllers NHS England and PHE).
QMUL will receive only data that is pseudonymised, and where records have been removed for anyone who has registered a national data opt-out. QMUL will link the pseudonymised datasets using a study unique ID.
QMUL will analyse and report the data.
Queen Mary researchers applied for and secured funding from Cancer Research UK to undertake this work. Cancer Research UK are not involved in processing data or controlling the aims or directions of this study.
The aim of the work is to assess whether those that do not engage with screening are more likely to die (from all-cause mortality and from a list of pre-specified cause specific codes). It has always been hypothesised (but never proven) that women in poor health are less likely to attend cervical screening (and hence more likely to die). Queen Mary researchers aim to find out if this is true and to quantify the magnitude of this effect. The ultimate aim is to use the findings to improve the cervical screening programme.
This is a one-off new study. It is not part of a bigger study, although one other similar study which used Dutch data exists.
The easiest way to find women in poor health is to select women who have died and compare them to women of the same age (at the time of death) who are still alive. Hence, mortality data from England is required, as are cervical screening histories from NHAIS to obtain screening histories for them. By comparing screening histories between both groups of women we can estimate the risk of death (overall and cause specific) among those who do and do not attend cervical screening.
Hence, QMUL would like the following information on women identified by Civil Registrations data:
- Month and Year of Death
- Cause of death (ICD-10)
Legal Basis under GDPR:
Article 6(1)(e): processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
Article 9(2)(h): processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3;
Article 9(2)(i): processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;
Article 9(2)(j): 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 Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
Expected output
An academic paper will be published in a cancer specialist open-access, peer-reviewed journals on risk of death (all cause and cause specific mortality) by attendance to screening by age and screening period.
A simplified version of the findings will be disseminated to charities (Cancer Research UK and Jo's Cervical Cancer Trust [www.jostrust.org.uk]) and published on the Wolfson Institute website.
Based on the publication a short presentation will be developed to summarise the findings for a range of stakeholders, including healthcare professionals and cervical screening policy makers. Findings will be presented at the following events: Public Health England patient outcomes conference, Human Papilloma Virus conference and Eurogin conference.
A close working relationship between researchers at QMUL and cervical screening policy makers already exists.
The aim is to complete the study 6 month after the data has been released to QMUL and publish outputs 3 months later. The original aim was to deliver the peer review manuscript by August 2019, but achieving this will now depend on when the data is released.
Due to the applicant not receiving the data, the output listed above will be delayed.
Output will be published as aggregated level data with small number suppressed, in line with the HES Analysis Guide.
Benefits reported
Due to the applicant not receiving the data, this Data Sharing Agreement has not yet met any of its benefits.
DARS-NIC-15741-J6Y4L-v1.2 1 February 2020 to 31 July 2020
- Title
- A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; Civil Registrations of Death - Secondary Care Cut
What changed from DARS-NIC-15741-J6Y4L-v0.8
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2020-02-01 | |
| End date | 2020-07-31 |
Objective for processing
[18 paragraphs unchanged] Legal Basis under GDPR: Article 6(1)(e): processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller; Article 9(2)(h): processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3; Article 9(2)(i): processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy; Article 9(2)(j): 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 Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
Expected output
[4 paragraphs unchanged]
The aim is to complete the study 6 month after the data has been released to QMUL and publish outputs 3 months later. The
original
aim
is
was
to deliver the peer review manuscript by August 2019, but achieving this will
now
depend on when the data is released.
Due to the applicant not receiving the data, the output listed above will be delayed.
[1 paragraph unchanged]
Expected measurable benefits
[2 paragraphs unchanged]
The benefits should be observed as soon as the outputs are in the public domain (i.e. once they are published or presented at a
conference/meeting)
conference/meeting), This was expected to be
around August 2019, although this will be dependent on the date QMUL
receive
receives
the data.
Due to the applicant not receiving the data, the output listed above will be delayed.
[6 paragraphs unchanged]
Benefits reported
Yielded Benefits is not a requirement for new applications.
Due to the applicant not receiving the data, this Data Sharing Agreement has not yet met any of its benefits.
Unchanged: Processing activities.
Objective for processing
Queen Mary University (QMUL) requires mortality data for use in the study ‘A study to investigate the association between selective uptake of cervical cancer screening and all-cause mortality’.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether women who suffer health problems are less likely to attend cervical cancer screening. The aim of the cervical cancer screening programme is to detect and treat precancerous lesions to avoid the development of cervical cancer. This results in cervical cancer being observed less frequently in women who have attended cervical screening. However it is not clear whether the low risk of being diagnosed with cervical cancer following a normal screening test is due to the screening test alone or whether it also reflects the possibility that those women who attend screening are healthier that those who do not, i.e. they are already at lower risk of cervical cancer than women who do not attend.
To explore whether this phenomenon exists, and its magnitude, the researchers have set up a case/cohort record linkage study involving the screening history of two samples of women. Phase 1 is a sample of women who died between 1992 and 2012 (and were aged 20-69 in 1992) who are described as ‘cases’. Phase 2 is a sample of women who have the same month and year of birth as the women identified in the 'cases', which is described as the ‘cohort’; it is possible that some of the individuals selected randomly into the 'cohort' will be deceased, therefore the 'cohort' will have a mixture of patients who are alive and deceased.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether healthy women are more likely to engage with cervical screening and, if they are, to establish the magnitude of this effect.
The study requires linkage of Civil Registrations mortality data to the cervical cancer screening database (also known as NHAIS).
The maximum estimated sample size of the 'cases' is n=26,850 - it is likely to be less than this because of overlaps in the specific mortality-cause samples and the all-cause mortality sample.
There will be an equal number of women identified by NHAIS in the ‘cohort’.
Therefore the maximum sample size would be n=53,700 - it is likely to be ca. 50,000, both because of the overlap within the 'cases' as described above, and because it is possible that some of the randomly-selected 'cohort' women will also be in the 'cases' group.
NHS Digital will be providing the Civil Registrations mortality data (under this DSA) and NHS Digital will be providing the NHAIS cervical screening data (under a separate DSA with the Data Controllers NHS England and PHE).
QMUL will receive only data that is pseudonymised, and where records have been removed for anyone who has registered a national data opt-out. QMUL will link the pseudonymised datasets using a study unique ID.
QMUL will analyse and report the data.
Queen Mary researchers applied for and secured funding from Cancer Research UK to undertake this work. Cancer Research UK are not involved in processing data or controlling the aims or directions of this study.
The aim of the work is to assess whether those that do not engage with screening are more likely to die (from all-cause mortality and from a list of pre-specified cause specific codes). It has always been hypothesised (but never proven) that women in poor health are less likely to attend cervical screening (and hence more likely to die). Queen Mary researchers aim to find out if this is true and to quantify the magnitude of this effect. The ultimate aim is to use the findings to improve the cervical screening programme.
This is a one-off new study. It is not part of a bigger study, although one other similar study which used Dutch data exists.
The easiest way to find women in poor health is to select women who have died and compare them to women of the same age (at the time of death) who are still alive. Hence, mortality data from England is required, as are cervical screening histories from NHAIS to obtain screening histories for them. By comparing screening histories between both groups of women we can estimate the risk of death (overall and cause specific) among those who do and do not attend cervical screening.
Hence, QMUL would like the following information on women identified by Civil Registrations data:
- Month and Year of Death
- Cause of death (ICD-10)
Legal Basis under GDPR:
Article 6(1)(e): processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
Article 9(2)(h): processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3;
Article 9(2)(i): processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy;
Article 9(2)(j): 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 Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
Expected output
An academic paper will be published in a cancer specialist open-access, peer-reviewed journals on risk of death (all cause and cause specific mortality) by attendance to screening by age and screening period.
A simplified version of the findings will be disseminated to charities (Cancer Research UK and Jo's Cervical Cancer Trust [www.jostrust.org.uk]) and published on the Wolfson Institute website.
Based on the publication a short presentation will be developed to summarise the findings for a range of stakeholders, including healthcare professionals and cervical screening policy makers. Findings will be presented at the following events: Public Health England patient outcomes conference, Human Papilloma Virus conference and Eurogin conference.
A close working relationship between researchers at QMUL and cervical screening policy makers already exists.
The aim is to complete the study 6 month after the data has been released to QMUL and publish outputs 3 months later. The original aim was to deliver the peer review manuscript by August 2019, but achieving this will now depend on when the data is released.
Due to the applicant not receiving the data, the output listed above will be delayed.
Output will be published as aggregated level data with small number suppressed, in line with the HES Analysis Guide.
Benefits reported
Due to the applicant not receiving the data, this Data Sharing Agreement has not yet met any of its benefits.
DARS-NIC-15741-J6Y4L-v0.8 1 February 2019 to 31 January 2020
- Title
- A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY
- Commercial
- No
- Sublicensing
- No
- Datasets
- 2
- Files released
- 1
Datasets: Civil Registrations of Death - Secondary Care Cut; Civil Registrations of Death - Secondary Care Cut
Objective for processing
Queen Mary University (QMUL) requires mortality data for use in the study ‘A study to investigate the association between selective uptake of cervical cancer screening and all-cause mortality’.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether women who suffer health problems are less likely to attend cervical cancer screening. The aim of the cervical cancer screening programme is to detect and treat precancerous lesions to avoid the development of cervical cancer. This results in cervical cancer being observed less frequently in women who have attended cervical screening. However it is not clear whether the low risk of being diagnosed with cervical cancer following a normal screening test is due to the screening test alone or whether it also reflects the possibility that those women who attend screening are healthier that those who do not, i.e. they are already at lower risk of cervical cancer than women who do not attend.
To explore whether this phenomenon exists, and its magnitude, the researchers have set up a case/cohort record linkage study involving the screening history of two samples of women. Phase 1 is a sample of women who died between 1992 and 2012 (and were aged 20-69 in 1992) who are described as ‘cases’. Phase 2 is a sample of women who have the same month and year of birth as the women identified in the 'cases', which is described as the ‘cohort’; it is possible that some of the individuals selected randomly into the 'cohort' will be deceased, therefore the 'cohort' will have a mixture of patients who are alive and deceased.
The study was designed and will be conducted by researchers at Queen Mary University of London with the aim of understanding whether healthy women are more likely to engage with cervical screening and, if they are, to establish the magnitude of this effect.
The study requires linkage of Civil Registrations mortality data to the cervical cancer screening database (also known as NHAIS).
The maximum estimated sample size of the 'cases' is n=26,850 - it is likely to be less than this because of overlaps in the specific mortality-cause samples and the all-cause mortality sample.
There will be an equal number of women identified by NHAIS in the ‘cohort’.
Therefore the maximum sample size would be n=53,700 - it is likely to be ca. 50,000, both because of the overlap within the 'cases' as described above, and because it is possible that some of the randomly-selected 'cohort' women will also be in the 'cases' group.
NHS Digital will be providing the Civil Registrations mortality data (under this DSA) and NHS Digital will be providing the NHAIS cervical screening data (under a separate DSA with the Data Controllers NHS England and PHE).
QMUL will receive only data that is pseudonymised, and where records have been removed for anyone who has registered a national data opt-out. QMUL will link the pseudonymised datasets using a study unique ID.
QMUL will analyse and report the data.
Queen Mary researchers applied for and secured funding from Cancer Research UK to undertake this work. Cancer Research UK are not involved in processing data or controlling the aims or directions of this study.
The aim of the work is to assess whether those that do not engage with screening are more likely to die (from all-cause mortality and from a list of pre-specified cause specific codes). It has always been hypothesised (but never proven) that women in poor health are less likely to attend cervical screening (and hence more likely to die). Queen Mary researchers aim to find out if this is true and to quantify the magnitude of this effect. The ultimate aim is to use the findings to improve the cervical screening programme.
This is a one-off new study. It is not part of a bigger study, although one other similar study which used Dutch data exists.
The easiest way to find women in poor health is to select women who have died and compare them to women of the same age (at the time of death) who are still alive. Hence, mortality data from England is required, as are cervical screening histories from NHAIS to obtain screening histories for them. By comparing screening histories between both groups of women we can estimate the risk of death (overall and cause specific) among those who do and do not attend cervical screening.
Hence, QMUL would like the following information on women identified by Civil Registrations data:
- Month and Year of Death
- Cause of death (ICD-10)
Expected output
An academic paper will be published in a cancer specialist open-access, peer-reviewed journals on risk of death (all cause and cause specific mortality) by attendance to screening by age and screening period.
A simplified version of the findings will be disseminated to charities (Cancer Research UK and Jo's Cervical Cancer Trust [www.jostrust.org.uk]) and published on the Wolfson Institute website.
Based on the publication a short presentation will be developed to summarise the findings for a range of stakeholders, including healthcare professionals and cervical screening policy makers. Findings will be presented at the following events: Public Health England patient outcomes conference, Human Papilloma Virus conference and Eurogin conference.
A close working relationship between researchers at QMUL and cervical screening policy makers already exists.
The aim is to complete the study 6 month after the data has been released to QMUL and publish outputs 3 months later. The aim is to deliver the peer review manuscript by August 2019, but achieving this will depend on when the data is released.
Output will be published as aggregated level data with small number suppressed, in line with the HES Analysis Guide.
Benefits reported
Yielded Benefits is not a requirement for new applications.
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.
-
July 2021 —
already listed in the earliest edition this site holds, so it may be older. 3 versions: DARS-NIC-15741-J6Y4L-v0.8, DARS-NIC-15741-J6Y4L-v1.2, DARS-NIC-15741-J6Y4L-v2.2
-
May 2022
1 version added: DARS-NIC-15741-J6Y4L-v3.1
-
October 2025
Renamed Data controllers: NHS England (Quarry House) now named NHS England. Not counted as a change.
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-15741-J6Y4L, “A STUDY TO INVESTIGATE THE ASSOCIATION BETWEEN SELECTIVE UPTAKE OF CERVICAL CANCER SCREENING AND ALL CAUSE MORTALITY”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-15741-j6y4l/ (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-15741-J6Y4L to see the original rows.