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Request for remote access to data in NHS England's environment for exploratory purposes

Office for National Statistics (ONS) · Agency/Public Body

Expired The latest version ended on 14 March 2025. The September 2026 register still lists the agreement, but its term has passed.

Reference
DARS-NIC-388794-Z9P3J
Latest version
v8.4
Term of latest version
11 March 2024 to 14 March 2025
Start date
13 July 2020
Data controller
Sole Data Controller
Commercial purposes
No
Sublicensing
No
Files released to date
0

Why the data was released

Objective for processing

Office for National Statistics (ONS) requires access to NHS England data for the purpose of supporting statistical analysis through analysing the feasibility and usefulness of NHS England data.

The work will improve understanding of the data available and support the development of statistics to determine how the data can be used to:

• Support numerical analysis on the quality of the underlying data itself and statistics produced in the two broad areas mentioned, so that the data can be used appropriately by others, and so that the statistics can be interpreted appropriately.

• To gain a better understanding of the datasets, its volume and variables, to inform the request for acquisition into the ONS for future linkage projects.

To support these statistical analyses, ONS will process NHS England data within the Secure Data Environment (SDE) to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. Data access is to provide ONS analysts with a better understanding of the dataset, the volume of data and the variables present, to inform the request for acquisition into the ONS for future linkage projects. Data assessed under this agreement will support structuring of specifications to inform separate requests for data to perform analysis supporting statistics produced under a definitive user need or request from key Government officials. Specifically, The Scientific Advisory Group for Emergencies (SAGE), the Chief Medical Officer, Department of Health and Social Care (DHSC), and the British Government itself.

The following NHS England data will be accessed:

• Mental Health Services Dataset – is necessary to supply ONS with information on the data’s variables, episodes, and suitability for statistical analysis to determine its use within future analysis. The view is that the dataset will provide relevant information on referrals and events related to national mental health services. Examples of which could include identification of mental health outcomes for different population groups and occupations; risk of suicide or death by drugs or alcohol for people who have received treatment recorded in MHSDS; those who have committed suicide and the contacts they may have had with different services for their mental health prior to their death and also specific mental health conditions (such as eating disorders, dementia or people detained under the mental health act).

The level of the data will be pseudonymised. ONS requires access to all available pseudonymised records within the Mental Health Services Dataset at a national level to adequately assess the usefulness and suitability of the dataset for statistical analysis. ONS may be required to produce statistics on mental health outcomes for any variants of population groups within England and the interactions these individuals have had with mental health services. There may also be a requirement to link this data with other national datasets, such as Hospital Episode Statistics data, to support the publication of statistics further.

Office for National Statistics (ONS) is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

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; The authority for ONS to produce, promote and safeguard official statistics is found in the Statistics and Registration Service Act 2007.

The lawful basis for processing special category data under the UK GDPR is:

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.

ONS is the United Kingdom's National Statistical Institute and largest independent producer of official statistics. It is responsible for producing statistics on a range of key economic, social and demographic topics in order to inform the needs of Government, society, academia and business and enable better decisions to be made. Access to NHS England data will allow ONS to produce statistics which are more granular and timelier at a lower cost to the public, therefore enabling better decisions and resource allocation.

ONS refer to the National Statistics Data Ethics Advisory Committee (NSDEC) for ethical review, the group was set up specifically to serve an equivalent role to a Research Ethics Committee for government statistical studies. Input from ONS’s Ethical Committee has not been sought for the purpose of this request as this request is not for the purpose of research & includes processing of pseudonymised data only. ONS will ensure that any further request for access to the data included in this agreement as a result of the data being deemed feasible for statistical analysis, will have ethical approval before requesting access to the dataset regardless of statutory route.

Processing activities

No cohort data will flow to NHS England for the purposes of this Agreement.

ONS requires online access to the record level datasets via the NHS England Secure Data Environment (SDE). The system is hosted and audited by NHS England meaning that large transfers of data to on-site servers is limited and NHS England has the ability to audit the use and access to the data. The NHS England SDE is a secure method giving access to datasets and associated analytical tools. It is accessed via a secure authentication method to named users. Users are only able to access the datasets detailed within this agreement. Users log onto the portal and are presented with analysis tools which allow them to access the relevant data sets and reference data tables so that they can return appropriate descriptions to the coded data. The access and use of the system is fully auditable and all users must comply with the use of the data as specified in this agreement.

NHS England data will provide the relevant records from the Mental Health Services Data Set (MHSDS) to Office for National Statistics (ONS). The data will contain no direct identifying data items. The data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The data will not be transferred to any other location. The data will be stored on servers at NHS England within the Secure Data Environment (SDE).

The data will be accessed by authorised personnel via remote access. The data will remain on the servers at NHS England at all times. The data will not leave England at any time.

Access is restricted to substantive employees of Office for National Statistics who have authorisation from the Director of Health Analysis and Pandemic Insight within ONS.

All personnel accessing the data have been appropriately trained in data protection and confidentiality.

The data will not be linked with any other data. There will be no requirement and no attempt to reidentify individuals when using the data. Analysts from the Office for National Statistics will process the data for the purposes described above.

Following similar principles to those adopted by the SAIL Databank for Wales (https://saildatabank.com/saildata/data-privacy-security/#secure-access) and the Scottish National Data Safe Haven (https://www.isdscotland.org/Products-and-Services/EDRIS/Use-of-the-National-Safe-Haven/), only summary, aggregate results data are exported from the SDE by ONS, subject to the approval of NHS England’s trained output checkers. This ensures that no output contains information which could be used either on its own or in conjunction with other data to breach an individual's privacy.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS England for scrutiny and quality assurance. NHS England will support ONS in understanding the data (e.g. variable definitions, limitations).

No outputs will be published based on the MHSDS data accessed in the secure NHS environment alone. This processing work is exclusively aimed at gaining a better understanding of the dataset to inform which variables are required in planned projects. The expected data outputs are aggregate summary statistics and plots, counts indicating sample sizes.

The expected outputs of the processing within ONS will be:

• A report of findings to ONS colleagues. Outputs are expected to be produced within 12 months of access to the data.

• ONS’ work to develop new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

Any outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Reports aimed at ONS colleagues

Target date for initial analysis is 3 months from start of data access to inform future analytical plans, and then 12 months from access for complete analysis to inform future analysis if data is then acquired.

Expected measurable benefits

The objective is exploration of the MHSDS ahead of any future applications to acquire data – this approach allows ONS to:

a) learn about the data before any application to acquire it, either partially or fully, so that ONS can complete projects for the public good more efficiently and accurately, and

b) minimise the request to include only those variables identified through learning more about the quality of the dataset.

ONS seeks to utilise NHS England's Secure Data Environment (SDE) to reduce the data protection risk compared with seeking a full extract of the data. Accessing the data in the NHSE SDE will allow more rapid production of data specifications for projects supporting statistical analysis and reduce data protection impact through the selection of only those variables that ONS identify as of suitable interest.

The results of the analysis will be used to inform members of SAGE, Members of Parliament (MPs) and other government officials of the differing COVID-19 risk profiles experienced by UK citizens. This risk model is expected to enable the government to refine its policy response to the pandemic using the best evidence available.

ONS analysts will have develop a good understanding of MHSDS enabling an improved data acquisition process into the ONS and ensuring analysts are aware of the potential projects that could be undertaken with the dataset and any limitations of the data. This may contribute to maximising the impact of future projects and provide basis for analysts to perform efficient analysis of the data. It is hoped that this efficient analysis for the data will allow ONS to produce robust statistical reports within a shorter timeframe. These reports will aim to support the management, improvement and commissioning decisions of mental health services nationally as well as public knowledge of the state and availability of these services. These changes would focus on improving public experience & access to these services at a national level, identifying areas where the services may lack and where improvement is necessary.

Access may reduce end-to-end time for data access requests aimed at driving more timely insights to facilitate evidence-based decision making for the public good. In line with national and ONS data strategies, ONS aim to make the best use of data available. Exploring the data quality prior to acquisition will ensure that future planned linkage projects are produced to high enough quality. If data quality is found not to be sufficient the projects will be discontinued to minimise the data protection impact on patients. Understanding the variables will mean that only necessary data are requested for acquisition, further minimising data protection impact.

Benefits reported so far

The following have been realised through processing of data previously accessed by ONS under previous versions of this Agreement via NHS England's SDE relate to processing of the data being removed from this agreement:

Using linked administrative datasets (primary care and hospitalisation records, death registration data), ONS investigated the post-COVID complications associated with hospitalisation for COVID-19.

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS England's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. An updated set of slides (February 2021) was also presented to the Secretary of State for Health and Social Care, the CMO for England, and at the DHSC long COVID roundtable chaired by Lord Bethell have been shared with NHS England's Profession Advisory Group.

ONS have explored the demographic and clinical characteristics of patients diagnosed with post-COVID-19 syndrome in primary care, and compared patterns in these characteristics to what ONS see for self-reported long COVID from the Coronavirus Infection Survey. Long COVID is obviously an increasingly important area, with an additional £100m funding announced in June 2021 in the NHS 2021/22 plan, and understanding the risk factors for developing long-term symptoms is central to this.

ONS’s more recent work, identified some similarities and some differences when comparing between clinically diagnosed post-COVID-19 syndrome and self-reported long COVID. For example, ethnic minorities appear to be more likely to be diagnosed but less likely to self-report. ONS have investigated these similarities and differences in more detail, and plan to discuss findings with academic and clinical collaborators to agree the next analytical steps. This work is essential for understanding the risk factors for long COVID and therefore ensuring treatment is well targeted, and also for identifying potentially under-served or under-diagnosed communities. This research, is being used by NHS England and Improvement (NHSEI) and Department for Health and Social Care (DHSC) for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. It is expected the analysis will go on to inform the NHS, and ONS are hoping to publish in a journal in the next months.

MARCH 2024 ACR UPDATE:

The most up to date purpose was:

‘to support statistical analysis through assessing the feasibility and effectiveness of processing NHS England data for future analysis and data acquisition’.

This statement still applies as ONS plan to continue to explore the Mental Health Services Dataset to support statistical analysis through assessing the feasibility and effectiveness of processing NHS England data for future analysis and data acquisition. In terms of progress, ONS have learned how and when to link all MHSDS tables and what each table contains. The main work was focused on understanding the data and how it can be used for analysis.

ONS has also calculated summary statistics/descriptives of people accessing secondary mental health services by mental health clusters/areas. ONS has also started to look at answering the question on Mental Health Act detention as this is something we would like to explore once the data gets to ONS.

Due to changes in ONS (redeployment, restructure and lack of line management cover) and other delays in different projects ONS were unable to find time to go back to SDE. Therefore, ONS need this access to answer questions on the data; ONS would do that by calculating some statistics and learning more about the data.

Before the current access to MHSDS (the only dataset in ONS's area at present), ONS used SDE access to other data as follows (data that is no longer in our project space).

Datasets on the latest version

Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)

Datasets approved under DARS-NIC-388794-Z9P3J-v8.4
DatasetType of dataSensitivity FrequencyConfidential data
Mental Health Services Data Set (MHSDS) Anonymised - ICO Code Compliant Sensitive System Access Does not include the flow of confidential data

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.

No files recorded as released under this agreement.

Version history

The register lists each renewal of this agreement as a separate row. This site has 9 versions.

DARS-NIC-388794-Z9P3J-v8.4 11 March 2024 to 14 March 2025
Title
Request for remote access to data in NHS England's environment for exploratory purposes
Commercial
No
Sublicensing
No
Datasets
1
Files released
0

Datasets: Mental Health Services Data Set (MHSDS)

What changed from DARS-NIC-388794-Z9P3J-v7.12

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v7.12
FieldWasBecame
Start date2023-05-052024-03-11
End date2024-05-042025-03-14

Benefits reported

[5 paragraphs unchanged] MARCH 2024 ACR UPDATE: The most up to date purpose was: ‘to support statistical analysis through assessing the feasibility and effectiveness of processing NHS England data for future analysis and data acquisition’. This statement still applies as ONS plan to continue to explore the Mental Health Services Dataset to support statistical analysis through assessing the feasibility and effectiveness of processing NHS England data for future analysis and data acquisition. In terms of progress, ONS have learned how and when to link all MHSDS tables and what each table contains. The main work was focused on understanding the data and how it can be used for analysis. ONS has also calculated summary statistics/descriptives of people accessing secondary mental health services by mental health clusters/areas. ONS has also started to look at answering the question on Mental Health Act detention as this is something we would like to explore once the data gets to ONS. Due to changes in ONS (redeployment, restructure and lack of line management cover) and other delays in different projects ONS were unable to find time to go back to SDE. Therefore, ONS need this access to answer questions on the data; ONS would do that by calculating some statistics and learning more about the data. Before the current access to MHSDS (the only dataset in ONS's area at present), ONS used SDE access to other data as follows (data that is no longer in our project space).

Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits.

DARS-NIC-388794-Z9P3J-v7.12 5 May 2023 to 4 May 2024
Title
Request for remote access to data in NHS England's environment for exploratory purposes
Commercial
No
Sublicensing
No
Datasets
1
Files released
0

Datasets: Mental Health Services Data Set (MHSDS)

What changed from DARS-NIC-388794-Z9P3J-v6.3

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v6.3
FieldWasBecame
TitleRequest for remote access to data in NHS Digital’s environment for COVID-19 purposesRequest for remote access to data in NHS England's environment for exploratory purposes
Start date2021-09-012023-05-05
End date2022-06-302024-05-04

Datasets: + Mental Health Services Data Set (MHSDS) · − COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); − COVID-19 SGSS First Positives (Second Generation Surveillance System); − COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); − Civil Registrations of Death - Secondary Care Cut; − 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

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as Scientific Advisory Group for Emergencies (SAGE) and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about: Office for National Statistics (ONS) requires access to NHS England data for the purpose of supporting statistical analysis through analysing the feasibility and usefulness of NHS England data. - the short, medium and long-term impacts of having had COVID-19 The work will improve understanding of the data available and support the development of statistics to determine how the data can be used to: - the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being • Support numerical analysis on the quality of the underlying data itself and statistics produced in the two broad areas mentioned, so that the data can be used appropriately by others, and so that the statistics can be interpreted appropriately. For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID. • To gain a better understanding of the datasets, its volume and variables, to inform the request for acquisition into the ONS for future linkage projects. As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GPES Data for Pandemic Planning and Research (GDPPR) data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions. To support these statistical analyses, ONS will process NHS England data within the Secure Data Environment (SDE) to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. Data access is to provide ONS analysts with a better understanding of the dataset, the volume of data and the variables present, to inform the request for acquisition into the ONS for future linkage projects. Data assessed under this agreement will support structuring of specifications to inform separate requests for data to perform analysis supporting statistics produced under a definitive user need or request from key Government officials. Specifically, The Scientific Advisory Group for Emergencies (SAGE), the Chief Medical Officer, Department of Health and Social Care (DHSC), and the British Government itself. While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID. The following NHS England data will be accessed: In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID diagnostic codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems. • Mental Health Services Dataset – is necessary to supply ONS with information on the data’s variables, episodes, and suitability for statistical analysis to determine its use within future analysis. The view is that the dataset will provide relevant information on referrals and events related to national mental health services. Examples of which could include identification of mental health outcomes for different population groups and occupations; risk of suicide or death by drugs or alcohol for people who have received treatment recorded in MHSDS; those who have committed suicide and the contacts they may have had with different services for their mental health prior to their death and also specific mental health conditions (such as eating disorders, dementia or people detained under the mental health act). As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician. The level of the data will be pseudonymised. ONS requires access to all available pseudonymised records within the Mental Health Services Dataset at a national level to adequately assess the usefulness and suitability of the dataset for statistical analysis. ONS may be required to produce statistics on mental health outcomes for any variants of population groups within England and the interactions these individuals have had with mental health services. There may also be a requirement to link this data with other national datasets, such as Hospital Episode Statistics data, to support the publication of statistics further. As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO. Office for National Statistics (ONS) is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above. Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment. The lawful basis for processing personal data under the UK GDPR is: Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B). 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; The authority for ONS to produce, promote and safeguard official statistics is found in the Statistics and Registration Service Act 2007. Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing: The lawful basis for processing special category data under the UK GDPR is: • COVID-19 Second Generation Surveillance System (Beta version) – 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. • COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types ONS is the United Kingdom's National Statistical Institute and largest independent producer of official statistics. It is responsible for producing statistics on a range of key economic, social and demographic topics in order to inform the needs of Government, society, academia and business and enable better decisions to be made. Access to NHS England data will allow ONS to produce statistics which are more granular and timelier at a lower cost to the public, therefore enabling better decisions and resource allocation. The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example: ONS refer to the National Statistics Data Ethics Advisory Committee (NSDEC) for ethical review, the group was set up specifically to serve an equivalent role to a Research Ethics Committee for government statistical studies. Input from ONS’s Ethical Committee has not been sought for the purpose of this request as this request is not for the purpose of research & includes processing of pseudonymised data only. ONS will ensure that any further request for access to the data included in this agreement as a result of the data being deemed feasible for statistical analysis, will have ethical approval before requesting access to the dataset regardless of statutory route. • Mortality data – identifies deaths involving COVID-19 • HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities • Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission • GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population • Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions. To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population. As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’. The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population. In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could: • help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection; • allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality). This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations. In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose. ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible.

Processing activities

NHS Digital has created a secure environment containing the data and provides restricted remote access to designated employees of the Office for National Statistics. Access to the data will be limited to only these individuals. No external data will be brought into NHS Digital’s data environment and linked with the data under this Agreement. Other than the datasets described in this Agreement no other data will be linked. No cohort data will flow to NHS England for the purposes of this Agreement. Any outputs exported from NHS Digital’s data environments will contain data only where that data is aggregated with small numbers will be suppressed in line with the HES Analysis Guide. ONS requires online access to the record level datasets via the NHS England Secure Data Environment (SDE). The system is hosted and audited by NHS England meaning that large transfers of data to on-site servers is limited and NHS England has the ability to audit the use and access to the data. The NHS England SDE is a secure method giving access to datasets and associated analytical tools. It is accessed via a secure authentication method to named users. Users are only able to access the datasets detailed within this agreement. Users log onto the portal and are presented with analysis tools which allow them to access the relevant data sets and reference data tables so that they can return appropriate descriptions to the coded data. The access and use of the system is fully auditable and all users must comply with the use of the data as specified in this agreement. No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices. NHS England data will provide the relevant records from the Mental Health Services Data Set (MHSDS) to Office for National Statistics (ONS). The data will contain no direct identifying data items. The data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient. 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). The data will not be transferred to any other location. The data will be stored on servers at NHS England within the Secure Data Environment (SDE). NHS Digital’s Security Advisor has reviewed ONS’ access arrangements and is content. The data will be accessed by authorised personnel via remote access. The data will remain on the servers at NHS England at all times. The data will not leave England at any time. Access is restricted to substantive employees of Office for National Statistics who have authorisation from the Director of Health Analysis and Pandemic Insight within ONS. All personnel accessing the data have been appropriately trained in data protection and confidentiality. The data will not be linked with any other data. There will be no requirement and no attempt to reidentify individuals when using the data. Analysts from the Office for National Statistics will process the data for the purposes described above. Following similar principles to those adopted by the SAIL Databank for Wales (https://saildatabank.com/saildata/data-privacy-security/#secure-access) and the Scottish National Data Safe Haven (https://www.isdscotland.org/Products-and-Services/EDRIS/Use-of-the-National-Safe-Haven/), only summary, aggregate results data are exported from the SDE by ONS, subject to the approval of NHS England’s trained output checkers. This ensures that no output contains information which could be used either on its own or in conjunction with other data to breach an individual's privacy.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital England for scrutiny and quality assurance. NHS Digital England will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review. limitations). The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics. No outputs will be published based on the MHSDS data accessed in the secure NHS environment alone. This processing work is exclusively aimed at gaining a better understanding of the dataset to inform which variables are required in planned projects. The expected data outputs are aggregate summary statistics and plots, counts indicating sample sizes. As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS. The expected outputs of the processing within ONS will be: Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners. • A report of findings to ONS colleagues. Outputs are expected to be produced within 12 months of access to the data. In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. • ONS’ work to development develop new official statistics may involve testing to investigate whether statistics of sufficient [15 words unchanged] while further work is done to improve quality aspects such as accuracy. No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices. Any outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived. In support of ONS's request to extend the end date of this agreement ONS provide the following rationale. The outputs will be communicated to relevant recipients through the following dissemination channels: ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to: • Reports aimed at ONS colleagues • follow up on long-covid outcomes particularly for the pandemic wave 2. ONS currently only hold the latest available GDPPR data in house. The data is delivered on a monthly basis. Target date for initial analysis is 3 months from start of data access to inform future analytical plans, and then 12 months from access for complete analysis to inform future analysis if data is then acquired. • access the new long-covid codes when they start filtering through. • allow analysts to start to familiarise themselves with more recent and new long-covid codes • allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included) • continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge • refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications ONS presented long-COVID complications to: Sir Ian Diamond (National Statistician), Matt Hancock (then Health Secretary), Chris Whitty (Chief Medical Officer), NHS Digital's Profession Advisory Group, Cabinet Offices long COVID roundtable. Published work: https://www.bmj.com/content/372/bmj.n693, https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/4june2021 Publications: Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I & Banerjee, A. (2021) Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study BMJ 2021; 372 :n693 https://doi.org/10.1136/bmj.n693 ONS (2021) Estimating the prevalence of long COVID symptoms and COVID-19 complications https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications

Expected measurable benefits

Analysis of the impact of having had COVID-19 and the impact of the pandemic on society, the economy and the environment it is hoped this will enable the government to better respond to the ongoing public health crisis, for example through tailored public health interventions. The objective is exploration of the MHSDS ahead of any future applications to acquire data – this approach allows ONS to: This analysis is of national public health importance and has been requested by the National Statistician, NHS Digital’s Chief Statistician and members of the Scientific Advisory Group for Emergencies (SAGE), so statistical accuracy and robustness is of upmost importance. The results of the analysis will be used to inform members of SAGE, Members of Parliament (MPs) and other government officials of the differing COVID-19 risk profiles experienced by UK citizens. This risk model is expected to enable the government to refine its policy response to the pandemic using the best evidence available. a) learn about the data before any application to acquire it, either partially or fully, so that ONS can complete projects for the public good more efficiently and accurately, and The analysis may also improve the public’s understanding of the risk faced by certain population groups, leading to more informed decision making, and add to the growing body of literature being produced and evaluated by the global academic community. b) minimise the request to include only those variables identified through learning more about the quality of the dataset. Ultimately this analysis has the potential to deliver public health benefit by reducing COVID-19 related mortality and morbidity in the UK. For example, even though COVID-19 death and hospital rates have reduced, investigation and understanding of long covid as such a new phenomenon is still required. Questions on the implications to wider and long-term health and risk of long-covid are still to be developed and answered such as recent discussion in SAGE about the need to explore clinical risk factors for long covid. https://www.gov.uk/government/publications/ons-short-report-on-long-covid-22-july-2021 ONS seeks to utilise NHS England's Secure Data Environment (SDE) to reduce the data protection risk compared with seeking a full extract of the data. Accessing the data in the NHSE SDE will allow more rapid production of data specifications for projects supporting statistical analysis and reduce data protection impact through the selection of only those variables that ONS identify as of suitable interest. When ONS first request this Data Sharing Agreement an additional specific benefit of the processing described above was that ONS analysts would be able to access, explore and understand how the new diagnostic codes in the GDPPR data could be refined and minimised should ONS subsequently acquire the data. ONS have now acquired the data under a separate Data Sharing Agreement and were able minimise the datasets requested to that necessary to achieve the purpose. Since then this Agreement has described additional benefits and requirements of maintaining access to the data in particular to be able to access timely data for rapid response to the coronavirus pandemic on emerging research questions. The results of the analysis will be used to inform members of SAGE, Members of Parliament (MPs) and other government officials of the differing COVID-19 risk profiles experienced by UK citizens. This risk model is expected to enable the government to refine its policy response to the pandemic using the best evidence available. ONS analysts will have develop a good understanding of MHSDS enabling an improved data acquisition process into the ONS and ensuring analysts are aware of the potential projects that could be undertaken with the dataset and any limitations of the data. This may contribute to maximising the impact of future projects and provide basis for analysts to perform efficient analysis of the data. It is hoped that this efficient analysis for the data will allow ONS to produce robust statistical reports within a shorter timeframe. These reports will aim to support the management, improvement and commissioning decisions of mental health services nationally as well as public knowledge of the state and availability of these services. These changes would focus on improving public experience & access to these services at a national level, identifying areas where the services may lack and where improvement is necessary. Access may reduce end-to-end time for data access requests aimed at driving more timely insights to facilitate evidence-based decision making for the public good. In line with national and ONS data strategies, ONS aim to make the best use of data available. Exploring the data quality prior to acquisition will ensure that future planned linkage projects are produced to high enough quality. If data quality is found not to be sufficient the projects will be discontinued to minimise the data protection impact on patients. Understanding the variables will mean that only necessary data are requested for acquisition, further minimising data protection impact.

Benefits reported

Long COVID: The following have been realised through processing of data previously accessed by ONS under previous versions of this Agreement via NHS England's SDE relate to processing of the data being removed from this agreement: [1 paragraph unchanged] ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's England's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information [48 words unchanged] long COVID roundtable chaired by Lord Bethell have been shared with NHS Digital's England's Profession Advisory Group. [2 paragraphs unchanged] These statistics and analysis are used to inform government policy and health campaign decisions, impacts include: Presented findings to 3,000 medical practitioners and health researchers at a British Medical Journal (BMJ) webinar, and to over 25,000 health professionals across 12 different countries at a long COVID training event to raise awareness of long covid across health professions, disseminate the findings and get clinical input to future analysis https://www.youtube.com/watch?v=z0ucL8MJzt8 Extensively cited in the National Institute for Health Research (NIHR) recent review of international evidence on long COVID prevalence and impact which is used to inform future diagnosis, treatment and research https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/ Fed into government thinking to inform on the response to the pandemic, by directly discussing the results with Matt Hancock and Chris Whitty, and providing written briefing to the PM https://www.gov.uk/government/publications/ons-post-covid-19-complications-following-hospitalisation-3-february-2021

Objective for processing

Office for National Statistics (ONS) requires access to NHS England data for the purpose of supporting statistical analysis through analysing the feasibility and usefulness of NHS England data.

The work will improve understanding of the data available and support the development of statistics to determine how the data can be used to:

• Support numerical analysis on the quality of the underlying data itself and statistics produced in the two broad areas mentioned, so that the data can be used appropriately by others, and so that the statistics can be interpreted appropriately.

• To gain a better understanding of the datasets, its volume and variables, to inform the request for acquisition into the ONS for future linkage projects.

To support these statistical analyses, ONS will process NHS England data within the Secure Data Environment (SDE) to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. Data access is to provide ONS analysts with a better understanding of the dataset, the volume of data and the variables present, to inform the request for acquisition into the ONS for future linkage projects. Data assessed under this agreement will support structuring of specifications to inform separate requests for data to perform analysis supporting statistics produced under a definitive user need or request from key Government officials. Specifically, The Scientific Advisory Group for Emergencies (SAGE), the Chief Medical Officer, Department of Health and Social Care (DHSC), and the British Government itself.

The following NHS England data will be accessed:

• Mental Health Services Dataset – is necessary to supply ONS with information on the data’s variables, episodes, and suitability for statistical analysis to determine its use within future analysis. The view is that the dataset will provide relevant information on referrals and events related to national mental health services. Examples of which could include identification of mental health outcomes for different population groups and occupations; risk of suicide or death by drugs or alcohol for people who have received treatment recorded in MHSDS; those who have committed suicide and the contacts they may have had with different services for their mental health prior to their death and also specific mental health conditions (such as eating disorders, dementia or people detained under the mental health act).

The level of the data will be pseudonymised. ONS requires access to all available pseudonymised records within the Mental Health Services Dataset at a national level to adequately assess the usefulness and suitability of the dataset for statistical analysis. ONS may be required to produce statistics on mental health outcomes for any variants of population groups within England and the interactions these individuals have had with mental health services. There may also be a requirement to link this data with other national datasets, such as Hospital Episode Statistics data, to support the publication of statistics further.

Office for National Statistics (ONS) is the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

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; The authority for ONS to produce, promote and safeguard official statistics is found in the Statistics and Registration Service Act 2007.

The lawful basis for processing special category data under the UK GDPR is:

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.

ONS is the United Kingdom's National Statistical Institute and largest independent producer of official statistics. It is responsible for producing statistics on a range of key economic, social and demographic topics in order to inform the needs of Government, society, academia and business and enable better decisions to be made. Access to NHS England data will allow ONS to produce statistics which are more granular and timelier at a lower cost to the public, therefore enabling better decisions and resource allocation.

ONS refer to the National Statistics Data Ethics Advisory Committee (NSDEC) for ethical review, the group was set up specifically to serve an equivalent role to a Research Ethics Committee for government statistical studies. Input from ONS’s Ethical Committee has not been sought for the purpose of this request as this request is not for the purpose of research & includes processing of pseudonymised data only. ONS will ensure that any further request for access to the data included in this agreement as a result of the data being deemed feasible for statistical analysis, will have ethical approval before requesting access to the dataset regardless of statutory route.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS England for scrutiny and quality assurance. NHS England will support ONS in understanding the data (e.g. variable definitions, limitations).

No outputs will be published based on the MHSDS data accessed in the secure NHS environment alone. This processing work is exclusively aimed at gaining a better understanding of the dataset to inform which variables are required in planned projects. The expected data outputs are aggregate summary statistics and plots, counts indicating sample sizes.

The expected outputs of the processing within ONS will be:

• A report of findings to ONS colleagues. Outputs are expected to be produced within 12 months of access to the data.

• ONS’ work to develop new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

Any outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Reports aimed at ONS colleagues

Target date for initial analysis is 3 months from start of data access to inform future analytical plans, and then 12 months from access for complete analysis to inform future analysis if data is then acquired.

Benefits reported

The following have been realised through processing of data previously accessed by ONS under previous versions of this Agreement via NHS England's SDE relate to processing of the data being removed from this agreement:

Using linked administrative datasets (primary care and hospitalisation records, death registration data), ONS investigated the post-COVID complications associated with hospitalisation for COVID-19.

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS England's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. An updated set of slides (February 2021) was also presented to the Secretary of State for Health and Social Care, the CMO for England, and at the DHSC long COVID roundtable chaired by Lord Bethell have been shared with NHS England's Profession Advisory Group.

ONS have explored the demographic and clinical characteristics of patients diagnosed with post-COVID-19 syndrome in primary care, and compared patterns in these characteristics to what ONS see for self-reported long COVID from the Coronavirus Infection Survey. Long COVID is obviously an increasingly important area, with an additional £100m funding announced in June 2021 in the NHS 2021/22 plan, and understanding the risk factors for developing long-term symptoms is central to this.

ONS’s more recent work, identified some similarities and some differences when comparing between clinically diagnosed post-COVID-19 syndrome and self-reported long COVID. For example, ethnic minorities appear to be more likely to be diagnosed but less likely to self-report. ONS have investigated these similarities and differences in more detail, and plan to discuss findings with academic and clinical collaborators to agree the next analytical steps. This work is essential for understanding the risk factors for long COVID and therefore ensuring treatment is well targeted, and also for identifying potentially under-served or under-diagnosed communities. This research, is being used by NHS England and Improvement (NHSEI) and Department for Health and Social Care (DHSC) for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. It is expected the analysis will go on to inform the NHS, and ONS are hoping to publish in a journal in the next months.

DARS-NIC-388794-Z9P3J-v6.3 1 September 2021 to 30 June 2022
Title
Request for remote access to data in NHS Digital’s environment for COVID-19 purposes
Commercial
No
Sublicensing
No
Datasets
8
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); COVID-19 SGSS First Positives (Second Generation Surveillance System); COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); 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-388794-Z9P3J-v5.4

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v5.4
FieldWasBecame
Start date2021-08-032021-09-01
End date2021-09-142022-06-30

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid [34 words unchanged] and has been requested by central government leaders and advisors such as SAGE Scientific Advisory Group for Emergencies (SAGE) and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about: [3 paragraphs unchanged] As another example, ONS has been requested as a priority to look [11 words unchanged] health for the whole population. This work will initially focus on the GDPPR GPES Data for Pandemic Planning and Research (GDPPR) data working with NHS Digital to identify common mental health conditions in [14 words unchanged] identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions. [24 paragraphs unchanged] ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible.

Expected measurable benefits

Analysis of the impact of having had COVID-19 and the impact of the pandemic on society, the economy and the environment it is hoped this will enable the government to better respond to the ongoing public health crisis, for example through tailored public health interventions. This analysis is of national public health importance and has been requested [49 words unchanged] the differing COVID-19 risk profiles experienced by UK citizens. This risk model will is expected to enable the government to refine its policy response to the pandemic using the best evidence available. [1 paragraph unchanged] Ultimately this analysis has the potential to deliver public health benefit by reducing COVID-19 related mortality and morbidity in the UK. For example, even though COVID-19 death and hospital rates have reduced, investigation and understanding of long covid as such a new phenomenon is still required. Questions on the implications to wider and long-term health and risk of long-covid are still to be developed and answered such as recent discussion in SAGE about the need to explore clinical risk factors for long covid. https://www.gov.uk/government/publications/ons-short-report-on-long-covid-22-july-2021 A When ONS first request this Data Sharing Agreement an additional specific benefit of the processing described above will be was that ONS analysts will would be able to access, explore and understand how the new diagnostic codes in the GDPPR data can could be refined and minimised should ONS subsequently use its statutory power to request or compel NHS Digital to transfer further extracts of GDPPR to ONS. ONS’ statutory powers to request or compel acquire the data. ONS have now acquired the data are shared is still subject to GDPR principles, including that data are minimised under a separate Data Sharing Agreement and were able minimise the datasets requested to that necessary to achieve the purpose. Therefore, the initial access under Since then this Agreement has described additional benefits and requirements of maintaining access to the processing work described above are necessary data in particular to support potential further uses of be able to access timely data for rapid response to the GDPPR data. coronavirus pandemic on emerging research questions.

Benefits reported

Long Covid COVID: [3 paragraphs unchanged] ONS’s more recent work, identified some similarities and some differences when comparing [74 words unchanged] identifying potentially under-served or under-diagnosed communities. This research, is being used by NHSEI NHS England and DHSC Improvement (NHSEI) and Department for Health and Social Care (DHSC) for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. The It is expected the analysis will go on to inform the NHS, and we’re ONS are hoping to publish in a journal in the next months. [1 paragraph unchanged] Presented findings to 3,000 medical practitioners and health researchers at a BMJ British Medical Journal (BMJ) webinar, and to over 25,000 health professionals across 12 different countries at [13 words unchanged] professions, disseminate the findings and get clinical input to future analysis https://www.youtube.com/watch?v=z0ucL8MJzt8 [2 paragraphs unchanged]

Unchanged: Processing activities, Expected output.

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as Scientific Advisory Group for Emergencies (SAGE) and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about:

- the short, medium and long-term impacts of having had COVID-19

- the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being

For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID.

As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GPES Data for Pandemic Planning and Research (GDPPR) data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions.

While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID.

In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID diagnostic codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems.

As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician.

As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO.

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing:

• COVID-19 Second Generation Surveillance System (Beta version) –

• COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types

The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example:

• Mortality data – identifies deaths involving COVID-19

• HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities

• Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission

• GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population

• Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services

Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions.

To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population.

As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’.

The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population.

In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could:

• help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection;

• allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality).

This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations.

In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose.

ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners.

In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

In support of ONS's request to extend the end date of this agreement ONS provide the following rationale.

ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to:

• follow up on long-covid outcomes particularly for the pandemic wave 2. ONS currently only hold the latest available GDPPR data in house. The data is delivered on a monthly basis.

• access the new long-covid codes when they start filtering through.

• allow analysts to start to familiarise themselves with more recent and new long-covid codes

• allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included)

• continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge

• refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications

ONS presented long-COVID complications to: Sir Ian Diamond (National Statistician), Matt Hancock (then Health Secretary), Chris Whitty (Chief Medical Officer), NHS Digital's Profession Advisory Group, Cabinet Offices long COVID roundtable.

Published work:

https://www.bmj.com/content/372/bmj.n693, https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/4june2021

Publications:

Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I & Banerjee, A. (2021) Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study BMJ 2021; 372 :n693 https://doi.org/10.1136/bmj.n693

ONS (2021) Estimating the prevalence of long COVID symptoms and COVID-19 complications https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications

https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications

Benefits reported

Long COVID:

Using linked administrative datasets (primary care and hospitalisation records, death registration data), ONS investigated the post-COVID complications associated with hospitalisation for COVID-19.

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. An updated set of slides (February 2021) was also presented to the Secretary of State for Health and Social Care, the CMO for England, and at the DHSC long COVID roundtable chaired by Lord Bethell have been shared with NHS Digital's Profession Advisory Group.

ONS have explored the demographic and clinical characteristics of patients diagnosed with post-COVID-19 syndrome in primary care, and compared patterns in these characteristics to what ONS see for self-reported long COVID from the Coronavirus Infection Survey. Long COVID is obviously an increasingly important area, with an additional £100m funding announced in June 2021 in the NHS 2021/22 plan, and understanding the risk factors for developing long-term symptoms is central to this.

ONS’s more recent work, identified some similarities and some differences when comparing between clinically diagnosed post-COVID-19 syndrome and self-reported long COVID. For example, ethnic minorities appear to be more likely to be diagnosed but less likely to self-report. ONS have investigated these similarities and differences in more detail, and plan to discuss findings with academic and clinical collaborators to agree the next analytical steps. This work is essential for understanding the risk factors for long COVID and therefore ensuring treatment is well targeted, and also for identifying potentially under-served or under-diagnosed communities. This research, is being used by NHS England and Improvement (NHSEI) and Department for Health and Social Care (DHSC) for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. It is expected the analysis will go on to inform the NHS, and ONS are hoping to publish in a journal in the next months.

These statistics and analysis are used to inform government policy and health campaign decisions, impacts include:

Presented findings to 3,000 medical practitioners and health researchers at a British Medical Journal (BMJ) webinar, and to over 25,000 health professionals across 12 different countries at a long COVID training event to raise awareness of long covid across health professions, disseminate the findings and get clinical input to future analysis https://www.youtube.com/watch?v=z0ucL8MJzt8

Extensively cited in the National Institute for Health Research (NIHR) recent review of international evidence on long COVID prevalence and impact which is used to inform future diagnosis, treatment and research https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/

Fed into government thinking to inform on the response to the pandemic, by directly discussing the results with Matt Hancock and Chris Whitty, and providing written briefing to the PM https://www.gov.uk/government/publications/ons-post-covid-19-complications-following-hospitalisation-3-february-2021

DARS-NIC-388794-Z9P3J-v5.4 3 August 2021 to 14 September 2021
Title
Request for remote access to data in NHS Digital’s environment for COVID-19 purposes
Commercial
No
Sublicensing
No
Datasets
8
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); COVID-19 SGSS First Positives (Second Generation Surveillance System); COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); 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-388794-Z9P3J-v4.2

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v4.2
FieldWasBecame
Start date2021-06-212021-08-03
End date2021-08-022021-09-14

Objective for processing

[6 paragraphs unchanged] In order to answer these emerging questions ONS is working collaboratively with [45 words unchanged] working in acquiring new data, for example from GP systems when long-COVID SNOMED diagnostic codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems. [22 paragraphs unchanged]

Expected output

[6 paragraphs unchanged] ********************* [2 paragraphs unchanged] • follow up on long-covid outcomes particularly for the pandemic wave 2 (ONS 2. ONS currently only hold the latest available GDPPR data to March 2021 in house) house. The data is delivered on a monthly basis. • access the new long-covid codes when they start filtering through from March 2021 through. [4 paragraphs unchanged] ONS presented long-COVID complications to: Sir Ian Diamond (National Statistician), Matt Hancock (then Health Secretary), Chris Whitty (Chief Medical Officer), NHS Digital's Profession Advisory Group, Cabinet Offices long COVID roundtable. Published work: https://www.bmj.com/content/372/bmj.n693, https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/4june2021 Publications: Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I & Banerjee, A. (2021) Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study BMJ 2021; 372 :n693 https://doi.org/10.1136/bmj.n693 ONS (2021) Estimating the prevalence of long COVID symptoms and COVID-19 complications https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications

Expected measurable benefits

[4 paragraphs unchanged] A specific benefit of the processing described above will be that ONS analysts will understand how the new SNOMED diagnostic codes in the GDPPR data can be refined and minimised should ONS [59 words unchanged] above are necessary to support potential further uses of the GDPPR data.

Benefits reported

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group. The findings have been published on ONS' website - see: https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. Long Covid Using linked administrative datasets (primary care and hospitalisation records, death registration data), ONS investigated the post-COVID complications associated with hospitalisation for COVID-19. ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. An updated set of slides (February 2021) was also presented to the Secretary of State for Health and Social Care, the CMO for England, and at the DHSC long COVID roundtable chaired by Lord Bethell have been shared with NHS Digital's Profession Advisory Group. ONS have explored the demographic and clinical characteristics of patients diagnosed with post-COVID-19 syndrome in primary care, and compared patterns in these characteristics to what ONS see for self-reported long COVID from the Coronavirus Infection Survey. Long COVID is obviously an increasingly important area, with an additional £100m funding announced in June 2021 in the NHS 2021/22 plan, and understanding the risk factors for developing long-term symptoms is central to this. ONS’s more recent work, identified some similarities and some differences when comparing between clinically diagnosed post-COVID-19 syndrome and self-reported long COVID. For example, ethnic minorities appear to be more likely to be diagnosed but less likely to self-report. ONS have investigated these similarities and differences in more detail, and plan to discuss findings with academic and clinical collaborators to agree the next analytical steps. This work is essential for understanding the risk factors for long COVID and therefore ensuring treatment is well targeted, and also for identifying potentially under-served or under-diagnosed communities. This research, is being used by NHSEI and DHSC for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. The analysis will go on to inform the NHS, and we’re hoping to publish in a journal in the next months. These statistics and analysis are used to inform government policy and health campaign decisions, impacts include: Presented findings to 3,000 medical practitioners and health researchers at a BMJ webinar, and to over 25,000 health professionals across 12 different countries at a long COVID training event to raise awareness of long covid across health professions, disseminate the findings and get clinical input to future analysis https://www.youtube.com/watch?v=z0ucL8MJzt8 Extensively cited in the National Institute for Health Research (NIHR) recent review of international evidence on long COVID prevalence and impact which is used to inform future diagnosis, treatment and research https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/ Fed into government thinking to inform on the response to the pandemic, by directly discussing the results with Matt Hancock and Chris Whitty, and providing written briefing to the PM https://www.gov.uk/government/publications/ons-post-covid-19-complications-following-hospitalisation-3-february-2021

Unchanged: Processing activities.

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as SAGE and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about:

- the short, medium and long-term impacts of having had COVID-19

- the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being

For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID.

As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GDPPR data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions.

While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID.

In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID diagnostic codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems.

As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician.

As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO.

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing:

• COVID-19 Second Generation Surveillance System (Beta version) –

• COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types

The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example:

• Mortality data – identifies deaths involving COVID-19

• HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities

• Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission

• GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population

• Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services

Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions.

To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population.

As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’.

The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population.

In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could:

• help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection;

• allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality).

This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations.

In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners.

In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

In support of ONS's request to extend the end date of this agreement ONS provide the following rationale.

ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to:

• follow up on long-covid outcomes particularly for the pandemic wave 2. ONS currently only hold the latest available GDPPR data in house. The data is delivered on a monthly basis.

• access the new long-covid codes when they start filtering through.

• allow analysts to start to familiarise themselves with more recent and new long-covid codes

• allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included)

• continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge

• refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications

ONS presented long-COVID complications to: Sir Ian Diamond (National Statistician), Matt Hancock (then Health Secretary), Chris Whitty (Chief Medical Officer), NHS Digital's Profession Advisory Group, Cabinet Offices long COVID roundtable.

Published work:

https://www.bmj.com/content/372/bmj.n693, https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications, https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/conditionsanddiseases/bulletins/prevalenceofongoingsymptomsfollowingcoronaviruscovid19infectionintheuk/4june2021

Publications:

Ayoubkhani D, Khunti K, Nafilyan V, Maddox T, Humberstone B, Diamond I & Banerjee, A. (2021) Post-covid syndrome in individuals admitted to hospital with covid-19: retrospective cohort study BMJ 2021; 372 :n693 https://doi.org/10.1136/bmj.n693

ONS (2021) Estimating the prevalence of long COVID symptoms and COVID-19 complications https://www.ons.gov.uk/news/statementsandletters/theprevalenceoflongcovidsymptomsandcovid19complications

https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications

Benefits reported

Long Covid

Using linked administrative datasets (primary care and hospitalisation records, death registration data), ONS investigated the post-COVID complications associated with hospitalisation for COVID-19.

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group and the Cabinet Offices long COVID roundtable. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic. An updated set of slides (February 2021) was also presented to the Secretary of State for Health and Social Care, the CMO for England, and at the DHSC long COVID roundtable chaired by Lord Bethell have been shared with NHS Digital's Profession Advisory Group.

ONS have explored the demographic and clinical characteristics of patients diagnosed with post-COVID-19 syndrome in primary care, and compared patterns in these characteristics to what ONS see for self-reported long COVID from the Coronavirus Infection Survey. Long COVID is obviously an increasingly important area, with an additional £100m funding announced in June 2021 in the NHS 2021/22 plan, and understanding the risk factors for developing long-term symptoms is central to this.

ONS’s more recent work, identified some similarities and some differences when comparing between clinically diagnosed post-COVID-19 syndrome and self-reported long COVID. For example, ethnic minorities appear to be more likely to be diagnosed but less likely to self-report. ONS have investigated these similarities and differences in more detail, and plan to discuss findings with academic and clinical collaborators to agree the next analytical steps. This work is essential for understanding the risk factors for long COVID and therefore ensuring treatment is well targeted, and also for identifying potentially under-served or under-diagnosed communities. This research, is being used by NHSEI and DHSC for ongoing decision-making around the provision of long COVID clinics and rehabilitation services. The analysis will go on to inform the NHS, and we’re hoping to publish in a journal in the next months.

These statistics and analysis are used to inform government policy and health campaign decisions, impacts include:

Presented findings to 3,000 medical practitioners and health researchers at a BMJ webinar, and to over 25,000 health professionals across 12 different countries at a long COVID training event to raise awareness of long covid across health professions, disseminate the findings and get clinical input to future analysis https://www.youtube.com/watch?v=z0ucL8MJzt8

Extensively cited in the National Institute for Health Research (NIHR) recent review of international evidence on long COVID prevalence and impact which is used to inform future diagnosis, treatment and research https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/

Fed into government thinking to inform on the response to the pandemic, by directly discussing the results with Matt Hancock and Chris Whitty, and providing written briefing to the PM https://www.gov.uk/government/publications/ons-post-covid-19-complications-following-hospitalisation-3-february-2021

DARS-NIC-388794-Z9P3J-v4.2 21 June 2021 to 2 August 2021
Title
Request for remote access to data in NHS Digital’s environment for COVID-19 purposes
Commercial
No
Sublicensing
No
Datasets
8
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); COVID-19 SGSS First Positives (Second Generation Surveillance System); COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); 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-388794-Z9P3J-v3.2

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v3.2
FieldWasBecame
Start date2021-03-162021-06-21
End date2021-06-302021-08-02

Expected output

[9 paragraphs unchanged] • follow up on long-covid outcomes particularly for the pandemic wave 2 (ONS currently only hold GDPPR data to August 2020 March 2021 in house) [5 paragraphs unchanged]

Unchanged: Objective for processing, Processing activities, Expected measurable benefits, Benefits reported.

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as SAGE and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about:

- the short, medium and long-term impacts of having had COVID-19

- the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being

For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID.

As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GDPPR data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions.

While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID.

In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID SNOMED codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems.

As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician.

As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO.

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing:

• COVID-19 Second Generation Surveillance System (Beta version) –

• COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types

The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example:

• Mortality data – identifies deaths involving COVID-19

• HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities

• Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission

• GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population

• Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services

Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions.

To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population.

As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’.

The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population.

In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could:

• help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection;

• allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality).

This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations.

In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners.

In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

*********************

In support of ONS's request to extend the end date of this agreement ONS provide the following rationale.

ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to:

• follow up on long-covid outcomes particularly for the pandemic wave 2 (ONS currently only hold GDPPR data to March 2021 in house)

• access the new long-covid codes when they start filtering through from March 2021

• allow analysts to start to familiarise themselves with more recent and new long-covid codes

• allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included)

• continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge

• refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications

Benefits reported

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group. The findings have been published on ONS' website - see: https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic.

DARS-NIC-388794-Z9P3J-v3.2 16 March 2021 to 30 June 2021
Title
Request for remote access to data in NHS Digital’s environment for COVID-19 purposes
Commercial
No
Sublicensing
No
Datasets
8
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); COVID-19 SGSS First Positives (Second Generation Surveillance System); COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); 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-388794-Z9P3J-v2.3

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v2.3
FieldWasBecame
Start date2020-12-212021-03-16
End date2021-03-312021-06-30

Expected output

[6 paragraphs unchanged] ********************* In support of ONS's request to extend the end date of this agreement ONS provide the following rationale. ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to: • follow up on long-covid outcomes particularly for the pandemic wave 2 (ONS currently only hold GDPPR data to August 2020 in house) • access the new long-covid codes when they start filtering through from March 2021 • allow analysts to start to familiarise themselves with more recent and new long-covid codes • allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included) • continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge • refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications

Unchanged: Objective for processing, Processing activities, Expected measurable benefits, Benefits reported.

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as SAGE and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about:

- the short, medium and long-term impacts of having had COVID-19

- the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being

For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID.

As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GDPPR data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions.

While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID.

In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID SNOMED codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems.

As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician.

As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO.

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing:

• COVID-19 Second Generation Surveillance System (Beta version) –

• COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types

The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example:

• Mortality data – identifies deaths involving COVID-19

• HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities

• Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission

• GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population

• Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services

Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions.

To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population.

As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’.

The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population.

In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could:

• help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection;

• allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality).

This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations.

In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners.

In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

*********************

In support of ONS's request to extend the end date of this agreement ONS provide the following rationale.

ONS require continued remote access to the NHS Digital system and for this to continue for the next year. This is largely because the remote access area currently contains ‘live’ or much more up-to-date data from the GDPPR dataset which is required to support response to emerging pandemic questions with the most timely data possible. In addition, the continued access is required to:

• follow up on long-covid outcomes particularly for the pandemic wave 2 (ONS currently only hold GDPPR data to August 2020 in house)

• access the new long-covid codes when they start filtering through from March 2021

• allow analysts to start to familiarise themselves with more recent and new long-covid codes

• allow analysts to carry out initial urgent analysis as outlined in the agreement as well as plan and carry out exploratory analysis to be transferred to ONS systems (where linkage to the Census can be included)

• continue access to covid-19 testing data which ONS do not yet have available and linked in-house should urgent question emerge

• refine and add to analysis already complete in the remote area and support refinement of analysis following feedback on publications

Benefits reported

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group. The findings have been published on ONS' website - see: https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic.

DARS-NIC-388794-Z9P3J-v2.3 21 December 2020 to 31 March 2021
Title
Request for remote access to data in NHS Digital’s environment for COVID-19 purposes
Commercial
No
Sublicensing
No
Datasets
8
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); COVID-19 SGSS First Positives (Second Generation Surveillance System); COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2); 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-388794-Z9P3J-v1.2

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v1.2
FieldWasBecame
TitleRequest for remote access to GDPPR for linkage to HES (including APC, OP, A&E and Critical Care) and mortality dataRequest for remote access to data in NHS Digital’s environment for COVID-19 purposes
Start date2020-10-132020-12-21
End date2021-01-122021-03-31

Datasets: + COVID-19 SGSS First Positives (Second Generation Surveillance System); + COVID-19 UK Non-hospital Antigen Testing Results (Pillar 2)

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as SAGE and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about: - the short, medium and long-term impacts of having had COVID-19 - the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID. As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GDPPR data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions. While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID. In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID SNOMED codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems. As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician. As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO. [1 paragraph unchanged] This Agreement extends the period for which ONS analysts are permitted to access the data within NHS Digital’s environment. [1 paragraph unchanged] Due to the size of the GDPPR data extract, it will take time before the dataset is fully transferred to ONS, ingested, data engineered and linked for analysis. In the meantime, ONS require uninterrupted access to linked GDPPR, HES and Mortality data to continue analyses in progress and to allow further investigations into the potential utilisation of the data to answer new questions in relation to COVID-19 which continue to be raised such as in relation to the phenomenon of ‘long-covid’. Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing: The remainder of this section is unchanged from version 0.2 of this Data Sharing Agreement. • COVID-19 Second Generation Surveillance System (Beta version) – - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - • COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types The Office for National Statistics (ONS) is working on urgent analysis to determine the population-level relative risk of hospitalisation or death that COVID-19 presents to different people. This is being achieved by linking information on outcomes with information on characteristics and underlying health conditions at a record level. The data being used so far are being processed and analysed on ONS’s secure data platform. These data are either owned by ONS or have been acquired through its statutory powers. The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example: However, there are some important information gaps in the data ONS has linked and has analysed so far. Primarily, this is to do with comorbidities and primary care data. Without a complete picture of comorbidities, it is difficult to give a fuller account of the differences being found in COVID-19 related mortality and morbidity between different groups/characteristics (such as ethnicity). • Mortality data – identifies deaths involving COVID-19 The information that has already been linked and is being analysed by ONS are as follows: • HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities • Information on the outcome of death comes from the death registration data ONS already processes and regularly publishes statistics on. • Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission • Information on socio-demographic characteristics such as ethnicity comes from the Census 2011. • GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population • Information on hospitalisation (serious illness) from COVID-19 as an outcome, and information on underlying conditions that result in hospital contact, come from Hospital Episodes Statistics (HES) data that ONS receives from NHS Digital under a separate Data Sharing Agreement. ONS compelled NHS Digital to share this HES data with ONS for the purposes of official statistics under Section 45C of the Statistics and Registration Services Act (2008), as amended by the Digital Economy Act (2017) • Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services ONS is currently unable to control for all comorbidities in statistical models using only the HES data because hospital attendances will only represent the most serious cases, with minor illnesses or managed chronic conditions being handled in primary care. It is likely these missing comorbidities are mediating some of the differences that have been found between different groups/characteristics such as ethnicity. Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions. ONS would like to include primary care data for all or most of the population too. And ideally, this would involve ONS acquiring and transferring the data onto its secure systems where it can be linked to the other data sources described at a record level. To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population. The government’s Scientific Advisory Group for Emergencies (SAGE) and the National Statistician are all keen that such an improvement to the project be enabled. As a result both ONS and NHS Digital are coming under significant pressure share relevant data quickly. More importantly, the insight gained from an improved study will inform decision making that could ultimately save lives. As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’. However, ONS and NHS Digital have agreed that some groundwork is needed in advance of ONS potentially compelling NHS Digital to share the data by issuing a legal Notice under the same statutory powers used to acquire the HES data. The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population. This involves ONS and NHS Digital collaborating to analyse the GPES Data for Pandemic Planning and Research (GDPPR) data on NHS Digital systems, where it can be linked to the HES and mortality data (i.e. the only data missing would be the ONS Census data). In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could: This will allow ONS and NHS Digital analysts to explore and analyse the data in situ, with a view to: • help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection; a) confirming there is a strong enough ‘public good’ case for the data being transferred onto ONS systems, and if so • allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality). b) refining and minimising any GDPPR extract/specification which ONS then compels NHS Digital to share This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations. This refinement is required because the ONS statutory power to compel data are shared is still subject to GDPR principles, including that data are minimised to that necessary to achieve the purpose. In addition, the powers are only applicable where ONS needs the information for its functions (essentially the production of official statistics for the public good). In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose. The quickest way to ensure these conditions are met is for ONS to gain access to the data remotely and collaborate with NHS Digital analysts as described. Unlike any subsequent transfer of data to ONS under its statutory powers, this remote access by ONS analysts will be covered by the COPI regulation. To be clear, the present application only covers this refinement stage. If/when ONS compels NHS Digital to share and transfer an extract onto ONS systems under its statutory powers, this will be supported by a separate DARS application and Data Sharing Agreement. In preparation for access to GDPPR data, ONS has been working with NHS Digital’s analytical experts to better understand GDPPR data and whether it will be fit for the statistical purposes to which ONS wants to put it. The ONS analysts have been provided with a GDPPR user guide and a data specification and have been involved in discussions to plan the setup of the data environment in which the data would be accessed. Once granted remote access to GDPPR data in a suitable and secure data environment within NHS Digital’s systems, ONS analysts will review the data items, coverage, quality and completeness of these data in line with ONS requirements for producing official statistics under the Code of Practice (particularly transparency, quality and improvement). The collaboration of ONS and NHS Digital analysts during this phase will support NHS Digital’s development and understanding of these new primary care data. Having access to HES, mortality and GDPPR data containing identifying details will enable ONS analysts to link individuals across the datasets. ONS does not require identifying details for any reason other than for data linkage. The linked dataset will not fully mirror the linked project dataset that ONS has already produced on its own systems because it will not include the Census 2011 data. However, risk modelling analysis that will inform decision making by bodies such as SAGE will still be possible by ONS and NHS Digital analysts working collaboratively. This work will also allow further development of the collaborative ONS-NHS Digital view on the quality and utility of the data, and whether there is a ‘public good’ case for any data being transferred to ONS under its statutory powers. Logically, this decision will revolve around the importance of any analyses that are still not possible because the linked data at NHS Digital lacks the Census information, and because the linked data at ONS lacks the GDPPR information. Note, the only way to bring all four sources together is at ONS. There is no legal gateway which allow the transfer of Census data to NHS Digital systems (whereas there is for the transfer of GDPPR data to ONS systems). The HES and mortality data included within this linked dataset created on NHS Digital systems will mirror the HES and mortality data that the ONS analysts already have access to on ONS systems. They are suitably security cleared and trained in working with such data. It is important to note that assessing the quality of the data is a key requirement to produce official statistics so that the strengths and limitations of the different data can be understood and applied or mitigated as required. ONS has to undertake preliminary work to assess the appropriateness of a datasets/data sources for use in the production of official statistics. As an example, noting that Type 1 Patient Objections will be applied to the GDPPR data, ONS will need to assess whether there is a need to make adjustments for that. As has been made clear, much of the proposed purpose here is to develop an understanding of the data through remote access so that any full acquisition of the data by ONS onto its systems can be minimised appropriately. However, ONS are also keen to minimise the access that ONS analysts get to the GDPPR data on NHS Digital systems where possible. Based on its current knowledge of the data, ONS considered how it could minimise the data requested as follows: • Years of data – ideally full histories for patients would be required to ensure we capture the full history of comorbidities but these could be minimised to data from March 2011 onwards in line with census year to allow for data on history of comorbidities to be applied to the study population appropriately. To note this would be for date of activity i.e. when the condition / event happened (not when the patient record was updated). • Patient groups – the whole population is required because the data are used to predict outcomes associated with COVID-19, and as such ONS needs to ensure it has a big enough population to be able to do the analysis. The risk model aims to identify how COVID-19 patients are different to rest of population so it needs details of all different population groups and needs data to be representative of the population. The linked study dataset ONS has produced includes over 50 million subjects for whom a full Census record is available and for whom it has been possible accurately assign an NHS number to (i.e. those who can then be more easily linked to other datasets that include NHS number such as HES and mortality data). • Cluster codes – it is currently difficult to specify any minimisation of the data based on cluster codes as the information and guidance on the cluster codes and identification of specific conditions and diagnosis are only just becoming available. A key part of this project is to understand and assess the quality of the data in the context of producing official statistics and as such this area of the data will be a key area requiring quality assessment (in terms of identifying all comorbidities). To minimise access to these data at this time may hamper a full assessment. • Local area data – postcode data is not required but analysis at a local level is required for the model. Data to Lower Super Output Area (LSOA) is required which will allow a link to socio-demographic variables as provided by the Index of Multiple deprivation (IMD). LSOA is provided in the standard GDPPR dataset so this is fine. The primary care data to be accessed will be limited to information on: • patient demographics• diagnoses and findings • medications and other prescribed items • investigations, tests and results • treatments and outcomes • vaccinations and immunisations ONS require patient-level data because ONS are interested in patient-level socio-demographics, clinical profiles and outcomes. Use of more aggregated (e.g. regional level) data would result in a lack of statistical precision and risks the analysis being subjected to the so-called ecological fallacy. At present the work ONS has done is only able to control for decade-old socio-demographic factors in its COVID-19 risk models. Up-to-date primary care data on clinical diagnoses, treatments and histories would allow ONS to substantially enhance the risk models, as comorbidities are likely to explain relatively large proportion of the variability in COVID-19 mortality risk. Whilst certain conditions are known to be risk factors for COVID-19 mortality/morbidity (e.g. patients with severe lung conditions or those on immunosuppressants), it is necessary to have access to the full range of diagnostic and treatment codes (including linkage to HES data) so patients’ comorbidity profiles can be fully explored and controlled for in the models.

Processing activities

NHS Digital will create has created a secure environment containing the data and provide provides restricted remote access to designated employees of the Office for National Statistics. [32 words unchanged] the datasets described in this Agreement no other data will be linked. [4 paragraphs unchanged]

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review. [2 paragraphs unchanged] Any official statistics produced will be shared with MPs, members of SAGE [17 words unchanged] will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners. In the event that ONS determines that use of the GDPPR data any given dataset is unsuitable for the purpose of producing official or identifies issues of [50 words unchanged] while further work is done to improve quality aspects such as accuracy. [1 paragraph unchanged]

Expected measurable benefits

Analysis of the impact of having had COVID-19 and the impact of the pandemic on society, the economy and the environment will enable the government to better respond to the ongoing public health crisis, for example through tailored public health interventions. [3 paragraphs unchanged] A specific benefit of the processing described above will be that ONS analysts will understand how the new SNOMED codes in the GDPPR data can be refined and minimised should ONS subsequently use its statutory power to request or compel NHS Digital to transfer an extract further extracts of GDPPR to ONS. ONS’ statutory power powers to request or compel data are shared is still subject to GDPR principles, including that [22 words unchanged] above are necessary to support potential further uses of the GDPPR data.

Benefits reported

Not stated in the previous version; added here.

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group. The findings have been published on ONS' website - see: https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic.

Objective for processing

The Office for National Statistics (ONS) has been asked to provide rapid responses to the coronavirus pandemic on emerging research questions which are arising as the pandemic continues and as understanding of COVID-19 and its impact increases. This work is to support the ongoing government response and has been requested by central government leaders and advisors such as SAGE and the government. The work will improve understanding of and support the development of statistics on what the data can be used to learn about:

- the short, medium and long-term impacts of having had COVID-19

- the impact COVID-19 and its associated social, economic and environmental impacts has had on health and well-being

For example, ONS has been tasked by the government, via the National Statistician, to scope out an analysis around the prevalence and risk factors for ‘long-COVID’- i.e. symptoms and conditions that persist/develop beyond the acute phase. This analysis is intended to inform public health messaging and interventions relating to long COVID.

As another example, ONS has been requested as a priority to look at the impact of the pandemic and the lockdown on mental health for the whole population. This work will initially focus on the GDPPR data working with NHS Digital to identify common mental health conditions in these new data. The work includes understanding the characteristics of the population at risk, identifying specific conditions, identifying new diagnoses and identifying changes in existing conditions.

While GDPPR data have now been transferred to ONS they are currently being processed to become ‘analysis ready’ (for example this includes restructuring the data from event level activity to person level records to allow for person level analysis). ONS need uninterrupted access to these linked data to allow these priority investigations to continue and to respond to new research questions and emerging phenomenon such as long-COVID.

In order to answer these emerging questions ONS is working collaboratively with NHS Digital to understand the data available; to assess its suitability to answer questions, and to provide initial ad hoc analysis. The work is being carried out in NHS Digital systems being remotely accessed by individually authorised ONS analysts and may also lead to collaborative working in acquiring new data, for example from GP systems when long-COVID SNOMED codes are included in the GDPPR, and to support the onward acquisition of data into ONS systems.

As the pandemic continues and understanding of coronavirus increases and changes, ONS need this ability to respond to emerging questions quickly. ONS will use the data under this Agreement to produce rapid responses to emerging questions driven by clinical issues relating to the COVID-19 pandemic as requested by either the Scientific Advisory Group for Emergencies (SAGE) or the Chief Medical Officer (CMO) via the National Statistician.

As new questions emerge which require investigation using the data under this Agreement, ONS will submit a briefing paper to NHS Digital outlining the question(s) to be answered and identify the source of the request as either SAGE or the CMO.

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Following collaborative work with NHS Digital, ONS has since identified the requirement for access to the following datasets containing information about COVID testing:

• COVID-19 Second Generation Surveillance System (Beta version) –

• COVID-19 UK Non-hospital Antigen Testing Results (pillar 2) Service Types

The datasets ONS have access to in the remote area are required to be linked in order to answer a wide range of emerging questions about the impact of the pandemic. For example:

• Mortality data – identifies deaths involving COVID-19

• HES data – can identify COVID-19 hospitalisations as well as more severe existing conditions or comorbidities

• Critical care data – can allow grading of morbidity according to severity, e.g. to stratify analysis of COVID-19 patients into those hospitalised with and without ICU admission

• GDPPR data – provide a complete history of conditions, comorbidities and risk factors and so the underlying health of the population

• Testing data – identifies people testing positive for COVID-19 including those who may not have been in contact with primary or secondary care services

Taken together these data will allow ONS to build a rich picture of the health state and experiences of the population due to COVID-19 and answer the emerging questions.

To expand on the use of testing data, as an example, a first stage of the analysis for long-COVID is to identify long-COVID symptoms. One of the current limitations of the data ONS have access to in the remote NHS Digital area is that they can only include cases of COVID-19 that have been clinically diagnosed and so appear in one of the current datasets (deaths, HES, GDPPR). These cases are therefore likely to consist of only the most serious cases, so the long-COVID incidence rates will not be generalisable to the broader population.

As such a second stage of the analysis planned is the inclusion of the different COVID-19 ‘testing data’.

The testing data will allow ONS to improve on the first stage of the long-COVID analysis by broadening the definition of COVID-19 cases to include those testing positive thereby reducing the impact of the current limitation. However, a continued limitation is acknowledged that a large proportion of people who have had COVID-19 were not tested, so the resulting long-COVID incidence rates based on testing data will still not be generalisable to the broader population.

In general, by linking COVID-19 testing data to the mortality, HES and GDPPR data, ONS would have a dataset containing a wide range of information on people who tested positive to COVID-19. This could:

• help improve estimates of prevalence and incidence of COVID-19 and understand things such as repeat infections and duration of infection;

• allow ONS to investigate the factors that predict severe outcomes (hospitalisation and mortality).

This work would aim to identify groups of people who are at particular risk of experiencing severe outcomes from COVID-19, which could have important public health and clinical recommendations.

In due course the intention is to combine these testing data with the Census, mortality, HES and GDPPR data held within ONS systems but the testing data will likely be directly acquired from Public Health England for this purpose.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in understanding the data (e.g. variable definitions, limitations) and in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website. Briefings for technical/expert audiences such as SAGE will not include any new statistics/figures that are not in the publicly available release (written in such a way as to be accessible to all including the general public). ONS will share any briefings produced for technical/expert audiences with the British Medical Association (BMA) and Royal College of General Practitioners.

In the event that ONS determines that use of any given dataset is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

Benefits reported

ONS produced a briefing on its analysis of long-COVID symptoms and COVID-19 complications which was presented to the National Statistician and subsequently shared with NHS Digital's Profession Advisory Group. The findings have been published on ONS' website - see: https://www.ons.gov.uk/releases/estimatingtheprevalenceoflongcovidsymptomsandcovid19complications. The information produced by ONS has been briefed to ministers enabling them to reach appropriate decisions in their response to the pandemic.

DARS-NIC-388794-Z9P3J-v1.2 13 October 2020 to 12 January 2021
Title
Request for remote access to GDPPR for linkage to HES (including APC, OP, A&E and Critical Care) and mortality data
Commercial
No
Sublicensing
No
Datasets
6
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); 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-388794-Z9P3J-v0.2

Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.

Fields changed from DARS-NIC-388794-Z9P3J-v0.2
FieldWasBecame
Start date2020-07-132020-10-13
End date2020-10-122021-01-12
Hospital Episode Statistics Critical Care (HES Critical Care): legal basisOther-COPI Regs 2020CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002

Objective for processing

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment. This Agreement extends the period for which ONS analysts are permitted to access the data within NHS Digital’s environment. Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B). Due to the size of the GDPPR data extract, it will take time before the dataset is fully transferred to ONS, ingested, data engineered and linked for analysis. In the meantime, ONS require uninterrupted access to linked GDPPR, HES and Mortality data to continue analyses in progress and to allow further investigations into the potential utilisation of the data to answer new questions in relation to COVID-19 which continue to be raised such as in relation to the phenomenon of ‘long-covid’. The remainder of this section is unchanged from version 0.2 of this Data Sharing Agreement. - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - [2 paragraphs unchanged] This purpose of this application is to seek approval to take the first steps in addressing this information gap. [37 paragraphs unchanged]

Benefits reported

Stated in the previous version and removed here.

Yielded Benefits is not a requirement for new applications.

Unchanged: Processing activities, Expected output, Expected measurable benefits.

Objective for processing

Under version 0.2 of this Data Sharing Agreement, analysts working for the Office for National Statistics (ONS) were granted remote access to linked GDPPR, HES and Mortality data within NHS Digital’s data environment.

This Agreement extends the period for which ONS analysts are permitted to access the data within NHS Digital’s environment.

Version 0.2 of this Agreement set out ONS’ intentions, prior to being granted data access, to review and analyse the data to determine if and how the data might be used to address gaps in ONS’ analyses of the risks associated with COVID-19. Since access was granted, the work undertaken by ONS analysts has led to subsets of GDPPR data being requested and approved for dissemination under a separate Agreement (DARS-NIC-400304-S1P1B).

Due to the size of the GDPPR data extract, it will take time before the dataset is fully transferred to ONS, ingested, data engineered and linked for analysis. In the meantime, ONS require uninterrupted access to linked GDPPR, HES and Mortality data to continue analyses in progress and to allow further investigations into the potential utilisation of the data to answer new questions in relation to COVID-19 which continue to be raised such as in relation to the phenomenon of ‘long-covid’.

The remainder of this section is unchanged from version 0.2 of this Data Sharing Agreement.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

The Office for National Statistics (ONS) is working on urgent analysis to determine the population-level relative risk of hospitalisation or death that COVID-19 presents to different people. This is being achieved by linking information on outcomes with information on characteristics and underlying health conditions at a record level. The data being used so far are being processed and analysed on ONS’s secure data platform. These data are either owned by ONS or have been acquired through its statutory powers.

However, there are some important information gaps in the data ONS has linked and has analysed so far. Primarily, this is to do with comorbidities and primary care data. Without a complete picture of comorbidities, it is difficult to give a fuller account of the differences being found in COVID-19 related mortality and morbidity between different groups/characteristics (such as ethnicity).

The information that has already been linked and is being analysed by ONS are as follows:

• Information on the outcome of death comes from the death registration data ONS already processes and regularly publishes statistics on.

• Information on socio-demographic characteristics such as ethnicity comes from the Census 2011.

• Information on hospitalisation (serious illness) from COVID-19 as an outcome, and information on underlying conditions that result in hospital contact, come from Hospital Episodes Statistics (HES) data that ONS receives from NHS Digital under a separate Data Sharing Agreement. ONS compelled NHS Digital to share this HES data with ONS for the purposes of official statistics under Section 45C of the Statistics and Registration Services Act (2008), as amended by the Digital Economy Act (2017)

ONS is currently unable to control for all comorbidities in statistical models using only the HES data because hospital attendances will only represent the most serious cases, with minor illnesses or managed chronic conditions being handled in primary care. It is likely these missing comorbidities are mediating some of the differences that have been found between different groups/characteristics such as ethnicity.

ONS would like to include primary care data for all or most of the population too. And ideally, this would involve ONS acquiring and transferring the data onto its secure systems where it can be linked to the other data sources described at a record level.

The government’s Scientific Advisory Group for Emergencies (SAGE) and the National Statistician are all keen that such an improvement to the project be enabled. As a result both ONS and NHS Digital are coming under significant pressure share relevant data quickly. More importantly, the insight gained from an improved study will inform decision making that could ultimately save lives.

However, ONS and NHS Digital have agreed that some groundwork is needed in advance of ONS potentially compelling NHS Digital to share the data by issuing a legal Notice under the same statutory powers used to acquire the HES data.

This involves ONS and NHS Digital collaborating to analyse the GPES Data for Pandemic Planning and Research (GDPPR) data on NHS Digital systems, where it can be linked to the HES and mortality data (i.e. the only data missing would be the ONS Census data).

This will allow ONS and NHS Digital analysts to explore and analyse the data in situ, with a view to:

a) confirming there is a strong enough ‘public good’ case for the data being transferred onto ONS systems, and if so

b) refining and minimising any GDPPR extract/specification which ONS then compels NHS Digital to share

This refinement is required because the ONS statutory power to compel data are shared is still subject to GDPR principles, including that data are minimised to that necessary to achieve the purpose. In addition, the powers are only applicable where ONS needs the information for its functions (essentially the production of official statistics for the public good).

The quickest way to ensure these conditions are met is for ONS to gain access to the data remotely and collaborate with NHS Digital analysts as described. Unlike any subsequent transfer of data to ONS under its statutory powers, this remote access by ONS analysts will be covered by the COPI regulation.

To be clear, the present application only covers this refinement stage. If/when ONS compels NHS Digital to share and transfer an extract onto ONS systems under its statutory powers, this will be supported by a separate DARS application and Data Sharing Agreement.

In preparation for access to GDPPR data, ONS has been working with NHS Digital’s analytical experts to better understand GDPPR data and whether it will be fit for the statistical purposes to which ONS wants to put it. The ONS analysts have been provided with a GDPPR user guide and a data specification and have been involved in discussions to plan the setup of the data environment in which the data would be accessed.

Once granted remote access to GDPPR data in a suitable and secure data environment within NHS Digital’s systems, ONS analysts will review the data items, coverage, quality and completeness of these data in line with ONS requirements for producing official statistics under the Code of Practice (particularly transparency, quality and improvement). The collaboration of ONS and NHS Digital analysts during this phase will support NHS Digital’s development and understanding of these new primary care data.

Having access to HES, mortality and GDPPR data containing identifying details will enable ONS analysts to link individuals across the datasets. ONS does not require identifying details for any reason other than for data linkage.

The linked dataset will not fully mirror the linked project dataset that ONS has already produced on its own systems because it will not include the Census 2011 data. However, risk modelling analysis that will inform decision making by bodies such as SAGE will still be possible by ONS and NHS Digital analysts working collaboratively.

This work will also allow further development of the collaborative ONS-NHS Digital view on the quality and utility of the data, and whether there is a ‘public good’ case for any data being transferred to ONS under its statutory powers. Logically, this decision will revolve around the importance of any analyses that are still not possible because the linked data at NHS Digital lacks the Census information, and because the linked data at ONS lacks the GDPPR information.

Note, the only way to bring all four sources together is at ONS. There is no legal gateway which allow the transfer of Census data to NHS Digital systems (whereas there is for the transfer of GDPPR data to ONS systems).

The HES and mortality data included within this linked dataset created on NHS Digital systems will mirror the HES and mortality data that the ONS analysts already have access to on ONS systems. They are suitably security cleared and trained in working with such data.

It is important to note that assessing the quality of the data is a key requirement to produce official statistics so that the strengths and limitations of the different data can be understood and applied or mitigated as required. ONS has to undertake preliminary work to assess the appropriateness of a datasets/data sources for use in the production of official statistics. As an example, noting that Type 1 Patient Objections will be applied to the GDPPR data, ONS will need to assess whether there is a need to make adjustments for that.

As has been made clear, much of the proposed purpose here is to develop an understanding of the data through remote access so that any full acquisition of the data by ONS onto its systems can be minimised appropriately. However, ONS are also keen to minimise the access that ONS analysts get to the GDPPR data on NHS Digital systems where possible.

Based on its current knowledge of the data, ONS considered how it could minimise the data requested as follows:

• Years of data – ideally full histories for patients would be required to ensure we capture the full history of comorbidities but these could be minimised to data from March 2011 onwards in line with census year to allow for data on history of comorbidities to be applied to the study population appropriately. To note this would be for date of activity i.e. when the condition / event happened (not when the patient record was updated).

• Patient groups – the whole population is required because the data are used to predict outcomes associated with COVID-19, and as such ONS needs to ensure it has a big enough population to be able to do the analysis. The risk model aims to identify how COVID-19 patients are different to rest of population so it needs details of all different population groups and needs data to be representative of the population. The linked study dataset ONS has produced includes over 50 million subjects for whom a full Census record is available and for whom it has been possible accurately assign an NHS number to (i.e. those who can then be more easily linked to other datasets that include NHS number such as HES and mortality data).

• Cluster codes – it is currently difficult to specify any minimisation of the data based on cluster codes as the information and guidance on the cluster codes and identification of specific conditions and diagnosis are only just becoming available. A key part of this project is to understand and assess the quality of the data in the context of producing official statistics and as such this area of the data will be a key area requiring quality assessment (in terms of identifying all comorbidities). To minimise access to these data at this time may hamper a full assessment.

• Local area data – postcode data is not required but analysis at a local level is required for the model. Data to Lower Super Output Area (LSOA) is required which will allow a link to socio-demographic variables as provided by the Index of Multiple deprivation (IMD). LSOA is provided in the standard GDPPR dataset so this is fine.

The primary care data to be accessed will be limited to information on:

• patient demographics• diagnoses and findings

• medications and other prescribed items

• investigations, tests and results

• treatments and outcomes

• vaccinations and immunisations

ONS require patient-level data because ONS are interested in patient-level socio-demographics, clinical profiles and outcomes. Use of more aggregated (e.g. regional level) data would result in a lack of statistical precision and risks the analysis being subjected to the so-called ecological fallacy. At present the work ONS has done is only able to control for decade-old socio-demographic factors in its COVID-19 risk models. Up-to-date primary care data on clinical diagnoses, treatments and histories would allow ONS to substantially enhance the risk models, as comorbidities are likely to explain relatively large proportion of the variability in COVID-19 mortality risk.

Whilst certain conditions are known to be risk factors for COVID-19 mortality/morbidity (e.g. patients with severe lung conditions or those on immunosuppressants), it is necessary to have access to the full range of diagnostic and treatment codes (including linkage to HES data) so patients’ comorbidity profiles can be fully explored and controlled for in the models.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website.

In the event that ONS determines that use of the GDPPR data is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

DARS-NIC-388794-Z9P3J-v0.2 13 July 2020 to 12 October 2020
Title
Request for remote access to GDPPR for linkage to HES (including APC, OP, A&E and Critical Care) and mortality data
Commercial
No
Sublicensing
No
Datasets
6
Files released
0

Datasets: Civil Registrations of Death - Secondary Care Cut; COVID-19 General Practice Extraction Service (GPES) Data for Pandemic Planning and Research (GDPPR); 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

The Office for National Statistics (ONS) is working on urgent analysis to determine the population-level relative risk of hospitalisation or death that COVID-19 presents to different people. This is being achieved by linking information on outcomes with information on characteristics and underlying health conditions at a record level. The data being used so far are being processed and analysed on ONS’s secure data platform. These data are either owned by ONS or have been acquired through its statutory powers.

However, there are some important information gaps in the data ONS has linked and has analysed so far. Primarily, this is to do with comorbidities and primary care data. Without a complete picture of comorbidities, it is difficult to give a fuller account of the differences being found in COVID-19 related mortality and morbidity between different groups/characteristics (such as ethnicity).

This purpose of this application is to seek approval to take the first steps in addressing this information gap.

The information that has already been linked and is being analysed by ONS are as follows:

• Information on the outcome of death comes from the death registration data ONS already processes and regularly publishes statistics on.

• Information on socio-demographic characteristics such as ethnicity comes from the Census 2011.

• Information on hospitalisation (serious illness) from COVID-19 as an outcome, and information on underlying conditions that result in hospital contact, come from Hospital Episodes Statistics (HES) data that ONS receives from NHS Digital under a separate Data Sharing Agreement. ONS compelled NHS Digital to share this HES data with ONS for the purposes of official statistics under Section 45C of the Statistics and Registration Services Act (2008), as amended by the Digital Economy Act (2017)

ONS is currently unable to control for all comorbidities in statistical models using only the HES data because hospital attendances will only represent the most serious cases, with minor illnesses or managed chronic conditions being handled in primary care. It is likely these missing comorbidities are mediating some of the differences that have been found between different groups/characteristics such as ethnicity.

ONS would like to include primary care data for all or most of the population too. And ideally, this would involve ONS acquiring and transferring the data onto its secure systems where it can be linked to the other data sources described at a record level.

The government’s Scientific Advisory Group for Emergencies (SAGE) and the National Statistician are all keen that such an improvement to the project be enabled. As a result both ONS and NHS Digital are coming under significant pressure share relevant data quickly. More importantly, the insight gained from an improved study will inform decision making that could ultimately save lives.

However, ONS and NHS Digital have agreed that some groundwork is needed in advance of ONS potentially compelling NHS Digital to share the data by issuing a legal Notice under the same statutory powers used to acquire the HES data.

This involves ONS and NHS Digital collaborating to analyse the GPES Data for Pandemic Planning and Research (GDPPR) data on NHS Digital systems, where it can be linked to the HES and mortality data (i.e. the only data missing would be the ONS Census data).

This will allow ONS and NHS Digital analysts to explore and analyse the data in situ, with a view to:

a) confirming there is a strong enough ‘public good’ case for the data being transferred onto ONS systems, and if so

b) refining and minimising any GDPPR extract/specification which ONS then compels NHS Digital to share

This refinement is required because the ONS statutory power to compel data are shared is still subject to GDPR principles, including that data are minimised to that necessary to achieve the purpose. In addition, the powers are only applicable where ONS needs the information for its functions (essentially the production of official statistics for the public good).

The quickest way to ensure these conditions are met is for ONS to gain access to the data remotely and collaborate with NHS Digital analysts as described. Unlike any subsequent transfer of data to ONS under its statutory powers, this remote access by ONS analysts will be covered by the COPI regulation.

To be clear, the present application only covers this refinement stage. If/when ONS compels NHS Digital to share and transfer an extract onto ONS systems under its statutory powers, this will be supported by a separate DARS application and Data Sharing Agreement.

In preparation for access to GDPPR data, ONS has been working with NHS Digital’s analytical experts to better understand GDPPR data and whether it will be fit for the statistical purposes to which ONS wants to put it. The ONS analysts have been provided with a GDPPR user guide and a data specification and have been involved in discussions to plan the setup of the data environment in which the data would be accessed.

Once granted remote access to GDPPR data in a suitable and secure data environment within NHS Digital’s systems, ONS analysts will review the data items, coverage, quality and completeness of these data in line with ONS requirements for producing official statistics under the Code of Practice (particularly transparency, quality and improvement). The collaboration of ONS and NHS Digital analysts during this phase will support NHS Digital’s development and understanding of these new primary care data.

Having access to HES, mortality and GDPPR data containing identifying details will enable ONS analysts to link individuals across the datasets. ONS does not require identifying details for any reason other than for data linkage.

The linked dataset will not fully mirror the linked project dataset that ONS has already produced on its own systems because it will not include the Census 2011 data. However, risk modelling analysis that will inform decision making by bodies such as SAGE will still be possible by ONS and NHS Digital analysts working collaboratively.

This work will also allow further development of the collaborative ONS-NHS Digital view on the quality and utility of the data, and whether there is a ‘public good’ case for any data being transferred to ONS under its statutory powers. Logically, this decision will revolve around the importance of any analyses that are still not possible because the linked data at NHS Digital lacks the Census information, and because the linked data at ONS lacks the GDPPR information.

Note, the only way to bring all four sources together is at ONS. There is no legal gateway which allow the transfer of Census data to NHS Digital systems (whereas there is for the transfer of GDPPR data to ONS systems).

The HES and mortality data included within this linked dataset created on NHS Digital systems will mirror the HES and mortality data that the ONS analysts already have access to on ONS systems. They are suitably security cleared and trained in working with such data.

It is important to note that assessing the quality of the data is a key requirement to produce official statistics so that the strengths and limitations of the different data can be understood and applied or mitigated as required. ONS has to undertake preliminary work to assess the appropriateness of a datasets/data sources for use in the production of official statistics. As an example, noting that Type 1 Patient Objections will be applied to the GDPPR data, ONS will need to assess whether there is a need to make adjustments for that.

As has been made clear, much of the proposed purpose here is to develop an understanding of the data through remote access so that any full acquisition of the data by ONS onto its systems can be minimised appropriately. However, ONS are also keen to minimise the access that ONS analysts get to the GDPPR data on NHS Digital systems where possible.

Based on its current knowledge of the data, ONS considered how it could minimise the data requested as follows:

• Years of data – ideally full histories for patients would be required to ensure we capture the full history of comorbidities but these could be minimised to data from March 2011 onwards in line with census year to allow for data on history of comorbidities to be applied to the study population appropriately. To note this would be for date of activity i.e. when the condition / event happened (not when the patient record was updated).

• Patient groups – the whole population is required because the data are used to predict outcomes associated with COVID-19, and as such ONS needs to ensure it has a big enough population to be able to do the analysis. The risk model aims to identify how COVID-19 patients are different to rest of population so it needs details of all different population groups and needs data to be representative of the population. The linked study dataset ONS has produced includes over 50 million subjects for whom a full Census record is available and for whom it has been possible accurately assign an NHS number to (i.e. those who can then be more easily linked to other datasets that include NHS number such as HES and mortality data).

• Cluster codes – it is currently difficult to specify any minimisation of the data based on cluster codes as the information and guidance on the cluster codes and identification of specific conditions and diagnosis are only just becoming available. A key part of this project is to understand and assess the quality of the data in the context of producing official statistics and as such this area of the data will be a key area requiring quality assessment (in terms of identifying all comorbidities). To minimise access to these data at this time may hamper a full assessment.

• Local area data – postcode data is not required but analysis at a local level is required for the model. Data to Lower Super Output Area (LSOA) is required which will allow a link to socio-demographic variables as provided by the Index of Multiple deprivation (IMD). LSOA is provided in the standard GDPPR dataset so this is fine.

The primary care data to be accessed will be limited to information on:

• patient demographics• diagnoses and findings

• medications and other prescribed items

• investigations, tests and results

• treatments and outcomes

• vaccinations and immunisations

ONS require patient-level data because ONS are interested in patient-level socio-demographics, clinical profiles and outcomes. Use of more aggregated (e.g. regional level) data would result in a lack of statistical precision and risks the analysis being subjected to the so-called ecological fallacy. At present the work ONS has done is only able to control for decade-old socio-demographic factors in its COVID-19 risk models. Up-to-date primary care data on clinical diagnoses, treatments and histories would allow ONS to substantially enhance the risk models, as comorbidities are likely to explain relatively large proportion of the variability in COVID-19 mortality risk.

Whilst certain conditions are known to be risk factors for COVID-19 mortality/morbidity (e.g. patients with severe lung conditions or those on immunosuppressants), it is necessary to have access to the full range of diagnostic and treatment codes (including linkage to HES data) so patients’ comorbidity profiles can be fully explored and controlled for in the models.

Expected output

Analysis outputs will be shared with colleagues at the Office for National Statistics and NHS Digital for scrutiny and quality assurance. NHS Digital will support ONS in the production of any publications with a focus on statistical accuracy, quality assurance and robust peer review.

The use of the data will determine the viability of producing official statistics using the datasets. The processing outlined above may directly result in the production of official statistics or may inform a subsequent methodology which is then used to produce official statistics.

As part of this, a key output is that this work will inform what minimisation can be applied to the GDPPR data in the event that ONS subsequently compels NHS Digital to transfer an extract to ONS.

Any official statistics produced will be shared with MPs, members of SAGE and other government officials to inform the government’s response to the COVID-19 pandemic. Any official statistics produced will be published, for example on the Office for National Statistics website.

In the event that ONS determines that use of the GDPPR data is unsuitable for the purpose of producing official or identifies issues of significance with the data, it is possible that ONS would publish its findings in the form of methodological reports. ONS’ work to development new official statistics may involve testing to investigate whether statistics of sufficient quality can be produced and may also involve the production of statistics badged as ‘experimental’ while further work is done to improve quality aspects such as accuracy.

No patient-level data will be extracted from NHS systems. The expected data outputs are aggregate summary statistics, regression coefficients, and summary plots. All data outputs will be subject to any required disclosure control practices.

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.

"Amended in place" means NHS England changed the record without issuing a new version number. The register publishes no changelog for those edits; this site infers them by comparing editions. An edit is attributed to the edition it first appears in, not to the date it was made.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-388794-Z9P3J, “Request for remote access to data in NHS England's environment for exploratory purposes”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-388794-z9p3j/ (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-388794-Z9P3J to see the original rows.