NHS Digital Data Release Register - reformatted

Royal College Of Physicians Of London projects

363 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

🚩 Royal College Of Physicians Of London was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Royal College Of Physicians Of London may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

National Respiratory Audit Programme (NRAP): Mortality outcomes of patients included in the children and young people asthma clinical audit from Welsh services — DARS-NIC-727954-G5X8B

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2023-09-08 — 2025-09-07

Access method: One-Off

Data-controller type: DIGITAL HEALTH AND CARE WALES, HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP)

Sublicensing allowed: No

Datasets:

  1. Civil Registrations of Death

Objectives:

The Healthcare Quality Improvement Partnership (HQIP) and Digital Health and Care Wales (DHCW) require access to NHS England Data for the purpose of the National Respiratory Audit Programme (NRAP) – Secondary Care Children and Young People (CYP) Asthma Patients. The CYP Asthma audit reports on care processes provided in the acute hospital setting in England and Wales.

The aim of this Data Sharing Agreement is to link data collected in the CYP Asthma Audit to hospital readmissions Data and mortality Data, to illustrate whether the healthcare provided to patients admitted to hospital with an asthma attack has resulted in good or bad outcomes. The overarching aims of the CYP asthma audit are to:

• identify variability and deficiencies in the care received by children and young people admitted to hospital with asthma attacks
• support improvement by providing timely and relevant data/feedback to paediatricians and local hospital teams
• improve the basic standards of care for children and young people admitted to hospital with asthma attacks.

The following NHS England Data will be accessed:
• Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital

The level of the Data will be pseudonymised.

The data will be minimised as follows:
• Limited to a study cohort of CYP asthma patients identified within the audit

HQIP has commissioned the Royal College of Physicians (RCP) to undertake the work. DHCW are the funders of the work for the Welsh aspect of the audit. HQIP and DHCW are the controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above.

NHS England are the funders and joint controllers of the work for the English aspect of the audit. This is reflected under DARS-NIC-379653-W3G5Q. All NHS England Data for Welsh health service users is disseminated under DARS-NIC-379653-W3G5Q.

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.

HQIP’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) - processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

DHCW’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(h) - processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3.

The processing is in the public interest because the audits aim to drive improvements in the quality and safety of care and to improve outcomes for all patients.

The Royal College of Physicians (RCP) and Imperial College London are processors acting under the instructions of HQIP and DHCW. Imperial College London receive the Data from NHSE and combine it with the CYP asthma audit data to undertake the required analyses of individual patient outcomes, and generate aggregated unsuppressed Data for the RCP. The RCP incorporate the analysed outputs into reports and interpret the findings.

Once the national audit report has been drafted it is reviewed by representatives of other organisations who are members of NRAP governance groups (NRAP Board members and NRAP asthma advisory group members). Group members represent:

• NHS professionals (ie consultants, respiratory nurses)
• Charities (ie British Thoracic Society, Asthma + Lung UK, and Royal College of Paediatrics and Child Health)
• Other stakeholder organisations/ professional bodies (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time)
• Patient representatives with lived experience of asthma

NRAP will co-produce a comprehensive patient and public involvement and engagement (PPIE) strategy. Asthma + Lung UK and the Royal College of Paediatric and Child Health have been subcontracted to coordinate the recruitment, retention and engagement of patients in audit programme activities. NRAP will continue to work with these patients to identify key priorities for improvement, and ensure the aspects of care which are important to them are reported on. An infographic providing a concise, easy to read overview of the key findings will be produced so that patients and the general public can understand its messages.

Patients are represented at four levels of the NRAP governance structure, including:

• NRAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma.
• COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation.
• Asthma Advisory Group – two children and young people with asthma, and one carer of a child/young person with asthma.
• Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.

The Asthma Advisory Group and the Board included representation from two children/young people who sit on the Patient Panel (with attendance from the RCPCH Engagement Lead as chaperone) and one parent/carer of a child/young person with asthma. These representatives are not fixed/named (i.e. each meeting will have different Patient Panel representatives).

Expected Benefits:

The Children and Young People (CYP) asthma audit collects information on the processes of care provided to patients who are admitted to hospital for asthma attacks. Care is audited against national guidelines and standards, namely, National Institute of Health and Care Excellence (NICE) asthma guidelines and British Thoracic Society and Scottish Intercollegiate Guidelines Network BTS/SIGN guidelines on the management of asthma, the Royal College of Emergency Medicine (RCEM) moderate and severe asthma clinical audit 2016/17 and the Royal College of Physicians (RCP) why asthma still kills: national review of deaths (NRAD) recommendations. The data collected as part of the audit by hospital teams provides useful information on what happened during the admission but does not provide further information on longer-term outcomes following discharge. The Data requested in this application will therefore support the audit to measure the impact of admission for an asthma attack on readmissions and mortality, thereby generating greater impact for the audit and its aims to improve key processes of patient care (such as provision of asthma care bundles on discharge).

This information is expected to generate important knowledge that can inform the allocation of resources for asthma care in hospitals, leading to better commissioning and value for money within the NHS. This information is also particularly important given that respiratory disease, including asthma, features within the NHS Long Term Plan, which is driving to improve care for major health conditions (NHS Long Term Plan, 2019: https://www.longtermplan.nhs.uk/online-version/chapter-3- further-progress-on-care-quality-and-outcomes/better-care-for-major-health-conditions/respiratory-disease/). In addition, by requesting Data on the rate of patient co-morbidities, the National Respiratory Audit Programme (NRAP) can allow for more accurate risk assessment. This information should enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have.

The use of the Data could:
• help the system to better understand the health and care needs of populations.
• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of regional and national trends in health and social care needs.
• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs.
• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

Through publication of the national and hospital-level outcomes reports, the recommendations of the audit will be implemented by the relevant care providers and commissioners to ensure best practice across the board in the care of CYP asthma patients. Reports must be addressed by all NHS provider services as part of Quality Accounts. In between reports, NHS provider services are expected to implement any relevant recommendations and improve the quality care by carrying out a local gap analysis and making changes to service provision.

The NRAP would expect change to start shortly after publication of the report and within 3 years aims to improve process reliability of delivery of key aspects of asthma care from current levels to a level where all aspects of high quality care, as set out in National asthma Guidelines, are delivered in 80% of patients. If this is achieved, NRAP would hope to see a reduction in hospital admissions and a reduction in re-admissions following a discharge from hospital of 20%. It would also hope to see a reduction in mortality of a similar magnitude.

Awareness of what patients should expect from their care provider, and how their local provider Trust/Board is performing, can help people with asthma to insist on better quality care. The reports and supporting infographics can be used by patients and patient groups to communicate with their care provider if their care is not meeting the expected standards or if the service appears to be performing lower than expected.

The CYP asthma audit is part of a wider programme of asthma and COPD audits which also includes a healthcare improvement workstream. The NRAP works closely with organisations such as Asthma + Lung UK and the Royal College of Paediatrics and Child Health to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health).

Outputs:

The expected outputs of the processing will be:
• A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care
• Presentations at appropriate conferences with audiences made up of respiratory professionals in the medical field, such as the British Thoracic Society (BTS) Meetings; Primary Care Respiratory Society UK (PCRSUK) Annual Conference; Royal College of Paediatric and Child Health (RCPCH) Conference; and European Respiratory Society Congress

The 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:
• National outcomes report available via these websites:
o RCP: www.rcp.ac.uk/nrap
o NRAP (hosted by Crown Informatics): www.NRAP.org.uk
o HQIP’s website: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g – plus newsletters and bulletins
• Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).
• Social media
• Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members
• Conferences and events where NRAP has a presence (e.g. BTS Meetings)

The target dates for production and dissemination of the outputs are October 2025.

Processing:

Under DARS-NIC-379653-W3G5Q, Crown Informatics will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England Data.

NHS England will provide the relevant records from the Civil Registrations (Deaths) dataset to Imperial College London. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other record level data already held by the recipient.

Imperial College London will produce small numbers unsuppressed aggregated Data summarising relevant readmissions, comorbidities and mortality data, and securely transfer this to the Royal College of Physicians (RCP).

The data will be stored on servers at Imperial College London and RCP.

The Data will be accessed onsite at the premises of Imperial College London and RCP, and by authorised personnel from these organisations via remote access. The Data will remain on the servers at Imperial College London and RCP at all times.

Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices.

Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.

All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)).

The Data will not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP.

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

The Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics.

Imperial College London and the RCP do not hold any patient identifiable information. Imperial College London and the RCP have no requirement and will make no attempt to reidentify individuals.

The following analyses will be undertaken by Imperial College London:
• The proportion of patients who died within 30 days of index admission and 90 days of index admission
• The reasons for cause of death within the 30 days of index admission and 90 days of index admission
• Whether patients with comorbidities were more likely to die within 30/90 days of index admission
• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on mortality at 30 and/or 90 days.

The RCP will translate and contextualise the unsuppressed Data provided by Imperial College London into suppressed outputs for the national outcomes report. The RCP will also use the unsuppressed Data to support hospital teams with healthcare improvement and with queries relating to the hospital-level reports.

National Respiratory Audit Programme (NRAP): Mortality outcomes of patients included in the COPD clinical audit from Welsh services — DARS-NIC-727537-C3V4G

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2023-09-01 — 2025-08-31

Access method: One-Off

Data-controller type: DIGITAL HEALTH AND CARE WALES, HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP)

Sublicensing allowed: No

Datasets:

  1. Civil Registrations of Death

Objectives:

The Healthcare Quality Improvement Partnership (HQIP) and Digital Health and Care Wales (DHCW) require access to NHS England Data for the purpose of the National Respiratory Audit Programme (NRAP) – Secondary Care Chronic Obstructive Pulmonary Disease (COPD) Patients. The COPD audit reports on care processes provided in the acute hospital setting in England and Wales.

The aim of this Data Sharing Agreement is to link data collected in the COPD Audit to hospital readmissions Data and mortality Data, to illustrate whether the healthcare provided to patients admitted to hospital with a COPD exacerbation has resulted in good or bad outcomes. The overarching aims of the COPD audit are to:

• Identify variability and deficiencies in the care received by adults admitted to hospital with exacerbations of COPD
• Support improvement by providing timely and relevant data/ feedback to clinicians and local hospital teams
• Improve the basic standards of care for people admitted to hospital with exacerbations of COPD
• Support improvement of mortality and readmissions rates for people with COPD in England and Wales

The following NHS England Data will be accessed:
• Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital

The level of the Data will be pseudonymised.

The Data will be minimised as follows:
• Limited to a study cohort of adult COPD patients identified within the audit

HQIP has commissioned the Royal College of Physicians (RCP) to undertake the work. DHCW are the funders of the work for the Welsh aspect of the audit. HQIP and DHCW are the controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above.

NHS England are the funders and joint controllers of the work for the English aspect of the audit. This is reflected under DARS-NIC-349273-T3L4K. All NHS England Data for Welsh health service users is disseminated under DARS-NIC-349273-T3L4K.

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.

HQIP’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) - processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

DHCW’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(h) - processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3.

The processing is in the public interest because the audits aim to drive improvements in the quality and safety of care and to improve outcomes for all patients.

The Royal College of Physicians (RCP) and Imperial College London are processors acting under the instructions of HQIP and NHSE. Imperial College London receive the Data from NHSE and combine it with the COPD audit data to undertake the required analyses of individual patient outcomes, and generate aggregated unsuppressed Data for the RCP. The RCP incorporate the analysed outputs into reports and interpret the findings.

Once the national audit report has been drafted it is reviewed by representatives of other organisations who are members of NRAP governance groups (NRAP Board members and NRAP COPD advisory group members). Group members represent:

• NHS professionals (ie consultants, respiratory nurses)
• Charities (ie British Thoracic Society, Asthma + Lung UK)
• Other stakeholder organisations/ professional bodies (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time)
• Patient representatives who have COPD

NRAP will co-produce a comprehensive patient and public involvement and engagement (PPIE) strategy. Asthma + Lung UK have been subcontracted to coordinate the recruitment, retention and engagement of patients in audit programme activities. NRAP will continue to work with these patients to identify key priorities for improvement, and ensure the aspects of care which are important to them are reported on. An infographic providing a concise, easy to read overview of the key findings will be produced so that patients and the general public can understand its messages.

Patients are represented at four levels of the NRAP governance structure, including:

• NRAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma.
• COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation.
• Asthma Advisory Group – one adult with asthma, two children and young people with asthma, and one carer of a child/young person with asthma.
• Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.

Expected Benefits:

The COPD audit collects information on the processes of care provided to patients who are admitted to hospital for COPD exacerbations. Care is audited against national guidelines and standards, namely, National Institute of Health and Care Excellence (NICE) COPD guidelines. The data collected as part of the audit by hospital teams provides useful information on what happened during the admission but does not provide further information on longer-term outcomes following discharge. The Data requested in this Data Sharing Agreement will therefore support the audit to measure the impact of admission for a COPD exacerbation on readmissions and mortality, thereby generating greater impact for the audit and its aims to improve key processes of patient care (such as provision of COPD care bundles on discharge).

This information is expected to generate important knowledge that can inform the allocation of resources for COPD care in hospitals, leading to better commissioning and value for money within the NHS. This information is also particularly important given that respiratory disease, including COPD, features within the NHS Long Term Plan, which is driving to improve care for major health conditions (NHS Long Term Plan, 2019: https://www.longtermplan.nhs.uk/online-version/chapter-3- further-progress-on-care-quality-and-outcomes/better-care-for-major-health-conditions/respiratory-disease/). In addition, by requesting Data on the rate of patient co-morbidities, the National Respiratory Audit Programme (NRAP) can allow for more accurate risk assessment. This information should enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have.

The use of the Data could:
• help the system to better understand the health and care needs of populations.
• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of regional and national trends in health and social care needs.
• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs.
• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

Through publication of the national and hospital-level outcomes reports, the recommendations of the audit will be implemented by the relevant care providers and commissioners to ensure best practice across the board in the care of COPD patients. Reports must be addressed by all NHS provider services as part of Quality Accounts. In between reports, NHS provider services are expected to implement any relevant recommendations and improve the quality care by carrying out a local gap analysis and making changes to service provision.

The NRAP would expect change to start shortly after publication of the report and within 3 years aims to improve process reliability of delivery of key aspects of COPD care from current levels to a level where all aspects of high quality care, as set out in National COPD Guidelines, are delivered in 80% of patients. If this is achieved, NRAP would hope to see a reduction in hospital admissions and a reduction in re-admissions following a discharge from hospital of 20%. It would also hope to see a reduction in mortality of a similar magnitude.

Awareness of what patients should expect from their care provider, and how their local provider Trust/Board is performing, can help people with COPD to insist on better quality care. The reports and supporting infographics can be used by patients and patient groups to communicate with their care provider if their care is not meeting the expected standards or if the service appears to be performing lower than expected.

The COPD audit is part of a wider programme of asthma and COPD audits which also includes a healthcare improvement workstream. The NRAP works closely with organisations such as Asthma + Lung UK to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health).

Outputs:

The expected outputs of the processing will be:
• A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care
• Presentations at appropriate conferences with audiences made up of respiratory professionals in the medical field, such as the British Thoracic Society (BTS) Meetings; Primary Care Respiratory Society UK (PCRSUK) Annual Conference; Royal College of Paediatrics and Child Health (RCPCH) Conference; and European Respiratory Society Congress

The 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:
• National outcomes report available via these websites:
o RCP: www.rcp.ac.uk/nrap
o NRAP (hosted by Crown Informatics): www.NRAP.org.uk
o HQIP’s website: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g – plus newsletters and bulletins
• Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).
• Social media
• Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members
• Conferences and events where NRAP has a presence (e.g. BTS Meetings)

The target dates for production and dissemination of the outputs are October 2025.

Processing:

Under DARS-NIC-349273-T3L4K, Crown Informatics will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England Data.

NHS England will provide the relevant records from the Civil Registrations (Deaths) dataset to Imperial College London. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other record level data already held by the recipient.

Imperial College London will produce small numbers unsuppressed aggregated Data summarising relevant readmissions, comorbidities and mortality data, and securely transfer this to the Royal College of Physicians (RCP).

The data will be stored on servers at Imperial College London and RCP.

The Data will be accessed onsite at the premises of Imperial College London and RCP, and by authorised personnel from these organisations via remote access. The Data will remain on the servers at Imperial College London and RCP at all times.

Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices.

Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.

All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)).

The Data will not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP.

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

The Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics.

Imperial College London and the RCP do not hold any patient identifiable information. Imperial College London and the RCP have no requirement and will make no attempt to reidentify individuals.

The following analyses will be undertaken by Imperial College London:
• The proportion of patients who died within 30 days of index admission and 90 days of index admission
• The reasons for cause of death within the 30 days of index admission and 90 days of index admission
• Whether patients with comorbidities were more likely to die within 30/90 days of index admission
• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on mortality at 30 and/or 90 days.

The RCP will translate and contextualise the unsuppressed Data provided by Imperial College London into suppressed outputs for the national outcomes report. The RCP will also use the unsuppressed Data to support hospital teams with healthcare improvement and with queries relating to the hospital-level reports.

National Respiratory Audit Programme (NRAP): Mortality outcomes of patients included in the adult asthma clinical audit from Welsh services — DARS-NIC-727343-L3N2H

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2023-09-01 — 2025-08-31

Access method: One-Off

Data-controller type: DIGITAL HEALTH AND CARE WALES, HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP)

Sublicensing allowed: No

Datasets:

  1. Civil Registrations of Death

Objectives:

The Healthcare Quality Improvement Partnership (HQIP) and Digital Health and Care Wales (DHCW) require access to NHS England data for the purpose of the National Respiratory Audit Programme (NRAP) – Secondary Care Adult Asthma Patients. The adult asthma audit reports on care processes provided in the acute hospital setting in England and Wales.

The aim of this Data Sharing Agreement is to link data collected in the Adult Asthma Audit to hospital readmissions data collected from DHCW, and mortality Data collected from NHS England, to illustrate whether the healthcare provided to patients admitted to hospital with an asthma attack has resulted in good or bad outcomes. The overarching aims of the adult asthma audit are to:

• Identify variability and deficiencies in the care received by adults admitted to hospital with asthma attacks
• Support improvement by providing timely and relevant data/ feedback to clinicians and local hospital teams
• Improve the basic standards of care for people admitted to hospital with asthma attacks
• Support improvement of mortality and readmissions rates for people with asthma in England and Wales

The following NHS England Data will be accessed:
• Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital

The level of the Data will be pseudonymised.

The Data will be minimised as follows:
• Limited to a study cohort of adult asthma patients identified within the audit

HQIP has commissioned the Royal College of Physicians (RCP) to undertake the work. DHCW are the funders of the work for the Welsh aspect of the audit. HQIP and DHCW are the controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above.

NHS England are the funders and joint controllers of the work for the English aspect of the audit. This is reflected under DARS-NIC-357479-S6C7T. All NHS England Data for Welsh health service users is disseminated under DARS-NIC-357479-S6C7T.

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.

HQIP’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(i) - processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy.

DHCW’s lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(h) - processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3.

The processing is in the public interest because the audits aim to drive improvements in the quality and safety of care and to improve outcomes for all patients.

The Royal College of Physicians (RCP) and Imperial College London are processors acting under the instructions of HQIP and DHCW. Imperial College London receive the Data from NHSE and combine it with the adult asthma audit data to undertake the required analyses of individual patient outcomes, and generate aggregated unsuppressed data for the RCP. The RCP incorporate the analysed Data into reports and interpret the findings.

Once the national audit report has been drafted it is reviewed by representatives of other organisations who are members of NRAP governance groups (NRAP Board members and NRAP asthma advisory group members). Group members represent:

• NHS professionals (ie consultants, respiratory nurses)
• Charities (ie British Thoracic Society, Asthma + Lung UK)
• Other stakeholder organisations/ professional bodies (e.g Getting It Right First Time)
• Patient representatives who have asthma and/or COPD

NRAP will co-produce a comprehensive patient and public involvement and engagement (PPIE) strategy. Asthma + Lung UK have been subcontracted to coordinate the recruitment, retention and engagement of patients in audit programme activities. NRAP will continue to work with these patients to identify key priorities for improvement, and ensure the aspects of care which are important to them are reported on. An infographic providing a concise, easy to read overview of the key findings will be produced so that patients and the general public can understand its messages.

Patients are represented at four levels of the NRAP governance structure, including:

• NRAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma.
• COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation.
• Asthma Advisory Group – one adult with asthma or a carer of an adult with asthma.
• Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.

Expected Benefits:

The adult asthma audit collects information on the processes of care provided to patients who are admitted to hospital for asthma attacks. Care is audited against national guidelines and standards, namely, National Institute of Health and Care Excellence (NICE) asthma guidelines and British Thoracic Society guidelines on the management of asthma. The data collected as part of the audit by hospital teams provides useful information on what happened during the admission but does not provide further information on longer-term outcomes following discharge. The Data requested in this Data Sharing Agreement will therefore support the audit to measure the impact of admission for an asthma attack on readmissions and mortality, thereby generating greater impact for the audit and its aims to improve key processes of patient care (such as provision of asthma care bundles on discharge).

This information is expected to generate important knowledge that can inform the allocation of resources for asthma care in hospitals, leading to better commissioning and value for money within the NHS. This information is also particularly important given that respiratory disease, including asthma, features within the NHS Long Term Plan, which is driving to improve care for major health conditions (NHS Long Term Plan, 2019: https://www.longtermplan.nhs.uk/online-version/chapter-3- further-progress-on-care-quality-and-outcomes/better-care-for-major-health-conditions/respiratory-disease/). In addition, by requesting Data on the rate of patient co-morbidities, the National Respiratory Audit Programme (NRAP) can allow for more accurate risk assessment. This information should enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have.

The use of the Data could:
• help the system to better understand the health and care needs of populations.
• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of regional and national trends in health and social care needs.
• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs.
• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

Through publication of the national and hospital-level outcomes reports, the recommendations of the audit will be implemented by the relevant care providers and commissioners to ensure best practice across the board in the care of adult asthma patients. Reports must be addressed by all NHS provider services as part of Quality Accounts. In between reports, NHS provider services are expected to implement any relevant recommendations and improve the quality care by carrying out a local gap analysis and making changes to service provision.

The NRAP would expect change to start shortly after publication of the report and within 3 years aims to improve process reliability of delivery of key aspects of asthma care from current levels to a level where all aspects of high quality care, as set out in National Asthma Guidelines, are delivered in 80% of patients. If this is achieved, NRAP would hope to see a reduction in hospital admissions and a reduction in re-admissions following a discharge from hospital of 20%. It would also hope to see a reduction in mortality of a similar magnitude.

Additionally, awareness of what patients should expect from their care provider, and how their local provider Trust/Board is performing, can help people with asthma to insist on better quality care. The reports and supporting infographics can be used by patients and patient groups to communicate with their care provider if their care is not meeting the expected standards or if the service appears to be performing lower than expected.

The adult asthma audit is part of a wider programme of asthma and COPD audits which also includes a healthcare improvement workstream. The NRAP works closely with organisations such as Asthma + Lung UK to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health).

Outputs:

The expected outputs of the processing will be:
• A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care
• Presentations at appropriate conferences with audiences made up of respiratory professionals in the medical field, such as the British Thoracic Society (BTS) Meetings; Primary Care Respiratory Society UK (PCRSUK) Annual Conference; Royal College of Paediatrics and Child Health (RCPCH) Conference; and European Respiratory Society Congress

The 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:
• National outcomes report available via these websites:
o RCP: www.rcp.ac.uk/nrap
o NRAP (hosted by Crown Informatics): www.NRAP.org.uk
o HQIP’s website: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g – plus newsletters and bulletins
• Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).
• Social media
• Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members
• Conferences and events where NRAP has a presence (e.g. BTS Meetings)

The target dates for production and dissemination of the outputs are October 2025 .

Processing:

Under DARS-NIC-357479-S6C7T, Crown Informatics will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, Gender and a unique person ID) for the cohort to be linked with NHS England Data.

NHS England will provide the relevant records from the Civil Registrations (Deaths) dataset to Imperial College London. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other record level data already held by the recipient.

Imperial College London will produce small numbers unsuppressed aggregated Data summarising relevant readmissions, comorbidities and mortality data, and securely transfer this to the Royal College of Physicians (RCP).

The data will be stored on servers at Imperial College London and RCP.

The Data will be accessed onsite at the premises of Imperial College London and RCP, and by authorised personnel from these organisations via remote access. The Data will remain on the servers at Imperial College London and RCP at all times.

Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices.

Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.

All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)).

The Data will not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP.

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

The Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics.

Imperial College London and the RCP do not hold any patient identifiable information. Imperial College London and the RCP have no requirement and will make no attempt to reidentify individuals.

The following analyses will be undertaken by Imperial College London:
• The proportion of patients who died within 30 days of index admission and 90 days of index admission
• The reasons for cause of death within the 30 days of index admission and 90 days of index admission
• Whether patients with comorbidities were more likely to die within 30/90 days of index admission
• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on mortality at 30 and/or 90 days.

The RCP will translate and contextualise the unsuppressed Data provided by Imperial College London into suppressed outputs for the national outcomes report. The RCP will also use the unsuppressed Data to support hospital teams with healthcare improvement and with queries relating to the hospital-level reports.

MR1346 - National Hip Fracture Database (DEMOGRAPHICS DATA ONLY) — DARS-NIC-468622-L9V8Z

Type of data: information not disclosed for TRE projects

Opt outs honoured: Identifiable, Yes, No (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261(5)(d)

Purposes: No (Academic)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2022-03-01 — 2023-03-31 2022.05 — 2024.03.

Access method: Ongoing, One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. Demographics
  2. Civil Registration - Deaths
  3. Civil Registrations of Death
  4. MRIS - List Cleaning Report

Yielded Benefits:

There have been no further yielded benefits realised since the previous version (DARS-NIC-10343-Z3M1B-v6.2). As part of the Falls and Fragility Fracture Audit Programme (FFFAP) within the Care Quality Improvement Department (CQID) at the Royal College of Physicians (RCP), the NHFD has now developed into a comprehensive quality improvement initiative and combines several elements: • description of facilities and practice in different units around the country • audit of practice against the NICE quality standard for hip fracture (QS16) • audit of practice against the NICE clinical guideline for hip fracture (CG124) • performance evaluation to support Monitor’s Best Practice Tariff (BPT) • support for clinical governance in individual hospitals • metrics to support patient safety monitoring • identification of outlier hospitals in respect of patient outcome • a framework to support local and national audit work • an infrastructure for scientific and research work • a resource of specialist information, expertise and networking. The data requested in these applications so far have supported: • More accurate risk-adjustment when comparing hospital performance, where linkage to HES allows better measurement and adjustment for patient comorbidity. This enables clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (value for money). • Measurement of the impact of hospital hip fracture care on long-term outcomes, where linkage to HES allows measurement of long-term outcomes such as readmission to hospital and future hip fractures. This will continue to generate important knowledge that will inform the allocation of resources for hip fracture care leading to better commissioning and value for money. • Measurement of the rate of return to independent living vs. residential care following a hip fracture. This is a key outcome of care. Each of the NHFD and HES database individually have shortcomings that can be overcome by using linked data. This will continue to be useful to clinicians and commissioners involved in design and funding of intermediate, rehabilitation and social care leading to better commissioning and value for money. Achievements from the HES and demographic data already held: • Calculation of annual case ascertainment rates to ensure the integrity and generalisability of the national audit findings • Further refinement, development and validation of a casemix adjustment model to ensure fair comparisons of outcome; including outcomes other than mortality • Production and updating of performance run charts of mortality to allow sites to monitor trends in patient outcome • Productions of annual summarys of casemix adjusted mortality to detect and support outlying sites • Calculated superspell length of stay and detected uncertainties in patient pathways for patients sent to rehabilitation units.

Expected Benefits:

As part of the Falls and Fragility Fracture Audit Programme (FFFAP) within the Care Quality Improvement Department (CQID) at the Royal College of Physicians (RCP), the NHFD has now developed into a comprehensive quality improvement initiative and combines several elements:

• description of facilities and practice in different units around the country
• audit of practice against the NICE quality standard for hip fracture (QS16)
• audit of practice against the NICE clinical guideline for hip fracture (CG124)
• performance evaluation to support Monitor’s Best Practice Tariff (BPT)
• support for clinical governance in individual hospitals
• metrics to support patient safety monitoring
• identification of outlier hospitals in respect of patient outcome
• a framework to support local and national audit work
• an infrastructure for scientific and research work
• a resource of specialist information, expertise and networking.

The data requested in this application will support:
• More accurate risk-adjustment when comparing hospital performance, where linkage to HES will allow better measurement and adjustment for patient comorbidity. This would enable clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (value for money).
• Measurement of the impact of hospital hip fracture care on long-term outcomes, where linkage to HES will allow measurement of long-term outcomes such as readmission to hospital and future hip fractures. This will generate important knowledge that will inform the allocation of resources for hip fracture care leading to better commissioning and value for money.
• Measurement of the rate of return to independent living vs. residential care following a hip fracture. This is a key outcome of care. Each of the NHFD and HES database individually have shortcomings that can be overcome by using linked data. This will be useful to clinicians and commissioners involved in design and funding of intermediate, rehabilitation and social care leading to better commissioning and value for money.
• More accurate estimation of case-ascertainment (i.e., number and % of hip fracture patients recorded in NHFD). Targeted action could be taken to inform hospitals with incomplete case-ascertainment this will lead to better future audit and hence more robust benefits derived from it.

What is hoped to be achieved with the HES and list cleaning data requested:

• Calculation of annual case ascertainment rates to ensure the integrity and generalisability of the national audit findings
• Further refinement of a casemix adjustment model(s) to ensure fair comparisons of outcome including outcomes other than mortality
• Continued production and updating of performance run charts of mortality to allow sites to monitor trends in patient outcome
• Continued productions of annual summary of casemix adjusted mortality to detect and support outlying sites
• Refinement of methodologies to detect superspell length of stay and detected assess persistent uncertainties in patient pathways for patients sent to rehabilitation units.

Codes identifying COVID status will allow the NHFD to monitor and with HQIP approval to publish trends in the prevalence of infection
- among inpatients
- among people presenting from the community, and
- among people from care homes; the most challenging and least understood setting in the current pandemic.

In particular, the additional COVID codes will allow for case-mix adjusted outcomes for the mortality data for the outlier analyses. This information would help inform the audit teams model for case-mix adjustment.

COVID-19 is the dominant factor affecting all hip fracture services around the country. Hospitals can already log this information themselves, but it is not easy for them to examine how COVID status affects the provision and outcome of care.

Outputs:

Publications and outputs using the data:
NHFD annual report 2016, 2017, 2018, 2019, 2020, 2021
NHFD commissioners report 2016, 2017
NHFD patient report 2018

Further results and methods used to derive case-ascertainment, casemix adjusted mortality and HES super-spells have been published by the RCP in the NHFD annual report in September 2017 and were further published in November 2018. The results of the other analyses will be published in other NHFD supplementary reports and /or peer-reviewed articles.

The RCP publish CCG level outcomes for the Best Practice Tariff and to support the NHS Outcomes Framework and CCG Outcome Indicators Set.

The RCP publish provider level outcomes for the Best Practice Tariff.

Crown Informatics make date of death & 30 day mortality flag to hospitals for statistical purposes such as monitoring trends (calculated from date of latest posting) for patients they submit to the audit. This allows registered Trust users of the system to be able to identify patients who have died within 30 days of hip fracture (including those who die after hospital discharge) and follow standard clinical governance processes to identify expected vs unexpected deaths, perform root cause analysis and assure whether good practices of care are followed. Sites can only access data for their own patients and these data flows are included and approved as part of the decision to support this use of confidential data by the HRA Confidentiality Advisory Group (under s251 of the NHS Act 2006).

Processing:

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).

As of 1 April 2021 the processing and analysis of the data will be completed by the University of Bristol by an individual who was previously based at the University of Oxford, both locations have been kept in the Data Sharing Agreement to facilitate the process, during the migration period.

The data currently held by the University of Oxford will be transferred to the University of Bristol using a safe and secure data transfer method. In Oxford, data is held in the data safe room, on a hard drive, where the data on the hard drive is contained in an encrypted veracrypt folder. The data will be securely uploaded directly to an encrypted folder to the secure server on the Safe Haven filestore at Bristol, by using a remote desktop and virtual private network.

Crown Informatics send NHS Number, Date of Birth, First Name, Surname, Gender, Full postcode and FFFAP ID (a study ID for the Falls and Fragility Fracture Audit Programme) to NHS Digital.

NHS Digital link the data and provide Crown Informatics with:
• Demographics File (validated identifiers) with FFFAP ID
• Date of latest posting with FFFAP ID

NHS Digital link the data and provide Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) with
o HES non sensitive data for cohort with FFFAP ID. (Linked Cohort)
o HES non sensitive data for falls patients who are not in cohort but have a diagnosis of a fall or fracture (Case Ascertainment Cohort)

Crown Informatics receive only the Demographic data from NHS Digital and combine with FFFAP data.

Name, Date of Birth, and postcode, which are included in the cleaned identifiers returned from list cleaning (the demographic file) will be destroyed after use.

Crown Informatics send validated identifiers and FFFAP ID to NWIS to receive Patient Episode Data for Wales (PEDW).

Crown Informatics send FFFAP ID and date of death data to Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol)

These other linkages will be performed separately to the NHS Digital linkage. The linkages to central NHS held data will only involve the transfer of data for patients recruited in those nations, so for example there will be no data transferred to NHS Digital for patients recruited in Welsh institution.

Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) and The Royal College of Physicians of London analyse data for audit purposes:
1. To estimate the annual number of hip-fractures in England at individual NHS trusts and hospitals so that levels of case-ascertainment within the NHFD can be derived.
2. To estimate whether there has been consistent reporting of outcomes to the NHFD by examining the agreement between the outcome measures derived from NHFD and HES data.
3. To calculate superspell figures for hospitals and NHS trusts from the last two available financial years and compare the average lengths of stays with superspell figures in the current year to assess whether there has been a reduction in acute and/or post-acute lengths of hospital stay.
4. Use HES to evaluate the benefit of long-term outcome measures such as 6-month/1-year survival and readmission profiles by using the ability of HES to track patients and describe their patterns of care after an incident hip fracture.
5. To validate and refine casemix risk adjustment models for the audit.
6. To examine life status at 30 days for statistical analysis. Case- mix adjustment performed by NDORMS.

Crown Informatics make life status 30 days - only of patients treated at that trust - available to trusts, for local audit purposes; life status for patients not treated at a trust will not be made available to a trust. For statistical purposes, such as monitoring trends, registered individuals at Trusts can access date of death for that trust’s patients which they submit to the audit derived from the list cleaning data. Charts and tables are also provided using 30 day survival. These data flows are included and approved as part of the decision to support this use of confidential data by the HRA Confidentiality Advisory Group (under s251 of the NHS Act 2006).

Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) statisticians are commissioned to perform complex statistical analysis for the purposes of the national clinical audit reporting. To this end they require HES linked data (for case ascertainment, superspell length of stay) and date of death from the list cleaning data (for casemix adjusted mortality analysis). RCP analysts perform all further ad hoc analysis to inform the conduct of the audit programme and the writing of annual reports – for the most part this takes place on NHFD data alone, but in some circumstances date of death from the list cleaning data is required to calculate patient outcome.

Crown Informatics, the RCP and Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) will all have access to patient level HES and date of latest posting data. Patient identifiers are not sent to RCP or Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) from Crown Informatics. Only pseudonymised data is sent to Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol). HES data will flow directly to Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) from NHS Digital.

The RCP commission Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) to perform key statistical analysis so in effect this is a collaboration since the RCP will advise on clinical elements of the methodology and will interpret the findings.

All individuals with access to record level data are employed by Crown Informatics, Royal College of Physicians, University of Bristol or University of Oxford. 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).

AIMES Management Services (also known as AIMES Grid Services) do not access data held under this agreement as they only supply the building. Therefore, any access to the data held under this agreement would be considered a breach of the agreement. This includes granting of access to the database[s] containing the data.

All outputs will be aggregated with small numbers suppressed in line with the HES analysis guide. No record level data falling under this agreement will be shared with any third-party.

A one-off data flow is planned, consisting of Mortality data only for 2011-2016 inclusive, to Bristol NHIR Biomedical Research Centre Musculoskeletal Research Unit (part of the University of Bristol) This is required for the development of live casemix-adjusted mortality run-charts, which will allow sites to monitor their mortality rates much more accurately and in real-time. This work is still ongoing.

National Asthma & COPD Audit Programme (NACAP): Outcomes of patients in the 2019/20 children and young people (CYP) asthma clinical audit. CYP admitted for asthma attacks discharged from acute hospitals between 1) 01/06/2019 and 31/01/2020 and 2) CYP discharged between 01/04/2021 and 31/03/2022. — DARS-NIC-379653-W3G5Q

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, Yes (Section 251 NHS Act 2006)

Legal basis: National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2021-10-01 — 2024-09-30 2022.08 — 2024.03.

Access method: One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. Civil Registration (Deaths) - Secondary Care Cut
  2. HES:Civil Registration (Deaths) bridge
  3. Hospital Episode Statistics Admitted Patient Care
  4. Civil Registrations of Death - Secondary Care Cut
  5. Hospital Episode Statistics Admitted Patient Care (HES APC)
  6. Civil Registrations of Death

Objectives:

This data sharing agreement relates to the secondary care children and young people asthma clinical element of the National Asthma and COPD (chronic obstructive pulmonary disease) Audit Programme (NACAP). The children and young people asthma audit has been running since 1 June 2019 and reports on care processes provided in the acute hospital setting such as: the provision of personalised asthma action plans, inhaler technique checking, smoking and specialist review and follow-up.

GDPR Article 6 (e): Public task: the processing is necessary for you to perform a task in the public interest or for your official functions, and the task or function has a clear basis in law. NACAP justification: The NACAP children and young people asthma audit is commissioned to collect information about the care provided to children and young people between the ages of 1-18 years old admitted to hospital with asthma attacks. It aims to highlight variations in care, promote quality improvement and thereby improve the standard of care provided to children and young people, in line with national guidelines and standards. In addition, in order to protect the anonymity of the data subjects, identifiable data is not published in reporting outputs nor is it processed for other purposes by third parties such as employers or insurance and banking companies.

GDPR Article 9 (i): Processing of special categories of personal data: processing is necessary for reasons of public interest in the area of public health. NACAP justification: The NACAP children and young people asthma audit is commissioned to collect information about the care provided to children and young people between the ages of 1 – 18 years old admitted to and discharged from hospital with asthma attacks. It aims to highlight variations in care, promote quality improvement and thereby improve the standard of care provided to patients, in line with national guidelines and standards. In addition, in order to protect the anonymity of the data subjects, identifiable data is not published in reporting outputs nor is it processed for other purposes by third parties such as employers or insurance and banking companies.

The NACAP is requesting the following information for the cohorts of patients identified above (children aged 1-18 years old admitted to hospital with asthma attacks), who were admitted to hospital on or after the key dates provided and were discharged by the key dates provided:
• Mortality within 30 days of index arrival and 90 days of index arrival (index arrival referring to the date recorded on the audit web tool of the patient’s arrival to hospital).
• Cause of mortality within 30 days of index arrival and 90 days of index arrival
• Readmission within 30 days of index discharge and 90 days of index discharge (index discharge referring to the date recorded on the audit web tool of the patient’s discharge from hospital).
• Cause of readmission within 30 days of index discharge and 90 days of index discharge
• All diagnosis codes for the audited patients to carry out analysis on readmissions and mortality in relation to comorbidities.

The NACAP have collected data on the healthcare provided to these children and young people through the audit data collection process and need to demonstrate whether or not this has resulted in good or bad outcomes, such as readmission to hospital or death (ie. the need for NHS Digital HES APC and Civil Registration – deaths data). There is no alternative way of achieving the purpose of this application as care processes will not be linked to other outcomes at this stage.

The National Asthma and COPD Audit Programme aims to improve the quality of services for children and young people between the ages of 1 – 18 years old with asthma by measuring and reporting on the delivery of care as defined by national guidelines and standards. The audit is included in the list of national audits for inclusion in the Trusts’ Quality Accounts. During the first round of data collection (1 June 2019 – 31 January 2020) 152 hospitals participated in the audit and 8,506 records were included in the first audit cycle (this includes a small number of Scottish records that will not be requested from NHS Digital). This request mirrors that of the COPD and adult asthma audits data request to NHS Digital under reference: DARS-NIC-349273-T3L4K-v4.13 and DARS-NIC-357479-S6C7T. Participation rates (hospitals and number of records) for the second cohort to be requested (in late 2022) is expected to be approximately 13,000.

The children and young people asthma audit workstream is one of five workstreams under the National Asthma and COPD Audit Programme (NACAP):

• COPD audit
• Adult asthma audit
• Children and young people asthma audit
• Pulmonary rehabilitation audit
• Wales primary care audit

The COPD audit has received linked outcome data under the programme previously, specifically under NHS Digital reference: DARS-NIC-349273-T3L4K-v4.13 for patients admitted to hospital with a COPD exacerbation. The adult asthma audit has also successfully set up a data access request for outcomes data recently (reference number DARS-NIC-357479-S6C7T). This agreement differs from those referenced above as although it is part of the COPD audit, it is requesting outcomes data for the children and young people asthma audit for patients of 1- 18 years that are admitted to hospital with an asthma attack.

Neither the primary care audit nor the pulmonary rehabilitation audit will be requesting NHS Digital data.

Data requests are also sent to the following bodies in order to report on outcomes for the audit cohort:
• NHS Wales Informatics Service (NWIS) for Patient Episode Database for Wales (PEDW) data (readmissions and diagnosis data only, as mortality data for Wales will be sourced via this National Health Services Digital (NHSD) application from the Office for National Statistics (ONS) datasets)
• National records for Scotland and Information Services Division (ISD) Scotland data
(Please note that Scotland will cease to commission NACAP from 1 March 2021. The NACAP has requested outcomes data from National records for Scotland and ISD Scotland data as per the above for the first patient cohort (patients admitted 1 June 2019 and discharged on or before 31 January 2020) as Scotland were still participating in the children and young people asthma audit at this point. However, their participation stopped in March 2020 and no further outcomes requests will therefore be made from this point and no further data shared with them).

In response to the COVID-19 pandemic, in April 2020 NHS England and Welsh Government removed the mandate requiring NHS services to participate in and submit data to NCAPOP audits, including NACAP. This was to ensure NHS services were focused on patient care. Further compounded by the fact that NACAPs audit community are respiratory teams who were very quickly mobilised to the front line, our participation rates dropped to approximately a third (in some instances less) of what they had been pre-pandemic. This was for all four NACAP secondary care and community audits.

This raised serious concerns about the quality and interpretability of data in any NACAP national reporting outputs covering COVID impacted period. It was also felt unfair and inappropriate to be publicly reporting on the quality of care and patient outcomes which would in no doubt be impacted by the exceptional circumstances’ services found themselves in.

It was therefore decided to cease all national reporting relating to COVID impacted data. Only reports covering pre-pandemic care has been published since April 2020. NACAP intends to resume national reports (clinical, organisational and outcomes) from December 2021 for any patients discharged from hospital from April 2021 onwards. All participating hospitals have had access to their real time reports via the NACAP web tool throughout the non-national reporting period and are able to track performance against key standards and guidelines this way.

The data requested will be linked to children and young people whose information has already been submitted to the children and young people’s asthma national clinical audit. NACAP produces clinical audit reports based on the data submitted by NHS trusts, and this will be followed by reports based on the outcomes data requested in this application (and the NHS Wales Informatics Service), demonstrating how the cohort fared during the follow up period. The NACAP is currently revising our approach to national reporting in light of COVID-19 impact. Data requested as part of this application will be incorporated into a national outcomes report which is to be produced for the children and young people asthma audit (30- and 90- day outcomes of patients that arrived at hospital on or after 1 June 2019 and were discharged by 31 January 2020 and patients discharged between 1 April 2021 and 31 March 2022.

The data requested in this agreement will be presented as part of national clinical audit reporting, specifically under the children and young people asthma audit workstream. The data will also be used to create hospital-level outcomes reports, presenting aggregate hospital-level mortality data (30-days and 90-days, as well as cause of mortality) and readmissions data (number of readmissions within 30 days, as well as reason for readmission). Again, these reports are specific to the children and young people asthma audit workstream.

The data subjects are made up of the cohorts outlined below.
1. Children and young people aged 1-18 years old who were admitted to hospital paediatric services with a primary diagnosis of asthma attack on or after 1 June 2019 and discharged by 31 January 2020, whose details have been entered into the children and young people asthma clinical audit data collection. The size of this cohort is 8,506 data subjects.

2. Children and young people aged 1-18 years old who were discharged from hospital paediatric services with a primary diagnosis of asthma attack between 1 April 2021 and 31 March 2022, whose details will be entered into the children and young people asthma clinical audit data collection. The size of this cohort is currently unknown.

As agreed in CAG approval (reference: 19/CAG/0001), Crown Informatics will send the following identifiers for the cohort to NHS Digital:

Study ID
NHS number
Date of Birth
Post code
Arrival and discharge date

Data required
Imperial College London require the following data, in order for the analysis team to report on readmissions, mortality, associations between likelihood of mortality and readmission with comorbidities:

- Hospital Episode Statistics Admitted Patient Care dataset
- Civil Registration (Deaths) - Secondary Care Cut dataset

The intention of this data request is to link the HES/civil registration dataset with the data received from the NACAP children and young people asthma audit dataset.

The data requested needs to include up to the 90 days following the last eligible discharge date for the audit cohort (ie up to 90 days following 31 January 2020).

Therefore, the data requested for these cohorts will be:
1 June 2019 - 31 January 2020, should span from 1 June 2019 up to 30 April 2020.
1 March 2021 – 31 March 2022, should span from 1 March 2021 up to 30 June 2022.

The NACAP requires the data requested from the HES APC dataset in order to understand what proportion of the audit cohort were readmitted to hospital 30 and 90 days following their audit index discharge, what the reason for their readmission was and what other co-existing diagnoses these patients had. The NACAP also requires the data requested from the Civil Registration (Deaths) Secondary Care Cut in order to understand what proportion of the audit cohort died 30 and 90 days after their audit index arrival and what the reasons for death was.

The data will be returned in record-level pseudonymised form to Imperial College, who will then match the data to the audit dataset and carry out analysis. Imperial requires record level data to track individual patient outcomes (readmissions and mortality). Analysed, aggregate unsuppressed data will then be provided to the Royal College of Physicians team (listed as a processor) for reporting. Suppression will then take place on aggregate data for the national report for small numbers, as per HES analysis guidelines. For hospital level reporting, small numbers at the level of the hospital remain unsuppressed (as the hospital holds the raw data for their audit cohort).

Only linked data for the cohort outlined in this application is requested. Please note that this is only for patients captured in the audit, not all eligible patients.

This request covers the geographic spread of the children and young people included in the national children and young people asthma audit in order to link with longer-term outcomes for this same cohort. For cohort 1 (1 June 2019 – 31 January 2020) it is England, Scotland and Wales and for cohort 2 (1 April 2021 – 31 March 2022) it is England and Wales only as Scotland will cease to commission NACAP as of 1 March 2021.

There are no alternative, less intrusive ways of the achieving the purpose of this request. The children and young people asthma audit dataset does not collect information on longer term outcomes of patients, or comorbidities; this dataset is specific to the care provided to patients treated for a particular admission to hospital for an asthma attack.

Healthcare Quality Improvement Partnership (HQIP) and NHS England are the joint data controllers for this request. Both HQIP and NHSE are responsible for complying with all the obligations of controllers under the UK GDPR and have a transparent arrangement that sets out agreed roles and responsibilities for complying with the UK GDPR. HQIP and NHS England also play a role in deciding the purposes and means of the processing of the data received by data processers and are involved in the decision making process pertaining to the information required from hospital team, NHSD, NWIS, and National Services Scotland (NSS) for NACAP reporting and quality improvement purposes.

There are two organisations involved in the processing of the NHSD data in this request:
• Imperial College London
Imperial College London are contracted by the Royal College of Physicians of London to carry out part of the data processing and are a sub-data processor as they are processing the data under the direction of HQIP/NHS England (the data controllers). Imperial College London receive the pseudonymised linked data from NHSD and processes the data once it has been combined (by Imperial College London) with the children and young people asthma audit data.
• Royal College of Physicians
Who are the Data Processor that receive analysed, aggregate unsuppressed data national and service level data only and incorporate analysed data into reports and interpret the findings.

Once the national audit report has been drafted (data included is aggregated, with small numbers suppressed as per HES analysis guide) it is reviewed by representatives of other organisations who are members of NACAP governance groups (NACAP Board members and NACAP asthma advisory group members). Other than the aggregated data, these organisations will not have access to the NHS Digital datasets and do not have any say in how the data is used or processed. Group members represent:
• Healthcare professionals (i.e. respiratory consultants, respiratory nurses).
• Charities and professional organisations (i.e. Asthma UK, British Lung Foundation, British Thoracic Society, and Royal College of Paediatrics and Child Health).
• Other stakeholder organisations/professional bodies (e.g. National Clinical Directors, Welsh Government and improvement bodies such as Getting It Right First Time (GIRFT)).
• Patient representatives with lived experience of asthma.

Following a period of review and quality assurance, the national report is submitted to the commissioner, and subsequently the funder, for sign-off and approval for publication. Please note that reports are always under embargo until funder approval publication of the report.

The Healthcare Quality Improvement Partnership are the NACAP commissioner, whilst NHS England, the Welsh Government are the NACAP funders.

The role of HQIP as the commissioner in this request is as follows:

• They mandate the need for NACAP to produce outcomes reports across the programme.
• They are only involved in the request itself at the end stage when the national report is drafted. At this stage they review the report and provide comment.

The role of NHS England and the Welsh Government as funders is as follows:
• They review the national report, following submission and acceptance of the national report to HQIP.
• The funders provide sign-off of the national report for publication (please note, hospital level reports are only provided to hospital teams on publication of the national report and are not reviewed by either the commissioner or funders).

NACAP has a patient panel which feed into all aspects of the programme. The patient panel support us with the identification of specific patient priorities which feed into the reporting outputs to ensure the aspects of care which are important to them are reported on. The patient panel will not specifically see the outputs to provide feedback on as the outcomes reports are produced more for service and national stakeholders review and action but an infographic providing a concise, easy to read overview of the key findings will be produced so that patients and the general public can understand its messages.

Patients were represented at four levels of the NACAP governance structure, including:
• NACAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma.
• COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation.
• Asthma Advisory Group – one adult with asthma, two children and young people with asthma, and one carer of a child/young person with asthma.
• Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.
The Asthma Advisory Group and the Board included representation from two children/young people who sit on the Patient Panel (with attendance from the RCPCH Engagement Lead as chaperone) and one parent/carer of a child/young person with
asthma. These representatives are not fixed/named (i.e. each meeting will have different Patient Panel representatives).

The patient panels meet regularly online to share priorities for respiratory care, review and discuss NACAP patient outputs and resources and discuss how they think NACAP can best educate and empower both patients and those responsible for providing their care.
- In 2018 NACAP worked with the adult panel to identify three key patient priorities to be addressed and reported on by NACAP
- In 2020, the RCPCH hosted 10 clinic chats with children and young people to discuss key priorities for improving asthma care for children and young people. Three were identified.
These six priorities now form a key part of the NACAP programme and its outputs and resources.

Yielded Benefits:

This is a new Data Sharing Agreement. No data has been disseminated by NHS Digital under this agreement. There are therefore no yielded benefits to date.

Outputs:

The audit will be missing one year of data (2020/21) at the height of the COVID-19 pandemic. The impact on outputs is that there will not be consecutive national reporting outputs as originally planned for the audit and may seemingly leave a ‘gap in knowledge’ and reduce the ability, initially, to track changes over time. However, with data entry levels being so low, the value and interpretation of that data raises more concerns than having this gap in reporting. Other than this, all patient outcomes reporting outputs will remain as planned and provide information on what happens to patients included in our audits after they have been discharged from hospital.
This decision (not to report on COVID impacted data) has been clearly communicated in a variety of formats and no concerns have been received from any of our stakeholders. Quality of care at individual hospital level has continued to be monitored via the NACAP real time reports accessible to participating hospitals.

Following analysis of the linked data, the NACAP will produce a national outcomes report, hospital-level outcomes reports and data and variable files. The data may also be used in abstracts and presentations used at relevant meetings and conferences hosted in the UK and abroad with audiences made up of respiratory professionals in the medical field. Such events include but are not limited to:
- British Thoracic Society (BTS) Winter Meeting
- Primary Care Respiratory Society UK (PCRSUK) Annual Conference
- Royal College of Paediatrics and Child Health (RCPCH) Conference
- European Respiratory Society Congress

National children and young people asthma audit outcomes report
The national outcomes report will provide national-level aggregated information. Small numbers will be suppressed, as per HES analysis guidelines.

Hospital-level children and young people asthma audit outcomes reports
The hospital-level outcomes report differs from the national outcomes report. A report for each individual hospital is created and uploaded to the web tool for the respective hospital to download. These reports are therefore accessible only to staff at the respective hospital and are not made available publicly. They provide hospital-level (site-level) aggregated information which is unsuppressed (given that the original data on the patients were collected by the respective hospital). These reports will be provided alongside data from the national report (suppressed where required) for comparison.

Data and variable files
These will contain hospital level aggregated data (with small number suppression) for all data items. They will be made publicly available on the RCP web pages and Data.gov.uk in line with the government’s transparency agenda. It will not be possible to identify individual patients using this information.

The following methods of dissemination will be used for the national children and young people asthma outcomes report and data files:
- The report will be made available on the following websites:
RCP website – www.rcplondon.ac.uk/nacap-paediatric-asthma.
Data.gov.uk - www.data.gov.uk.

NACAP website - Hosted by Crown Informatics - https://www.nacap.org.uk/
HQIP – NACAP page: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g
- Launch emails to relevant audit web tool users from registered hospitals across the country.
- Launch communications and briefings with stakeholder organisations (e.g. Royal College of Paediatrics and Child Health) and NACAP governance group members to further support their policy work
- Launch communications over social media (Twitter)
- Via conferences and events at which NACAP has a presence (e.g. British Thoracic Summer/Winter meetings)

The following methods of dissemination will be used for hospital-level children and young people asthma outcomes reports:
• Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).
• Hospitals will be encouraged to review their data in ongoing communications as relevant under the audit programme.
Note: these reports do not get disseminated further, therefore this is the only method by which these hospital-level reports are launched.

The first national and hospital-level reports due for publication under this application are expected to be published in spring 2022.

The target date for the production of the national children and young people asthma outcomes report, and hospital-level children and young people asthma outcomes report is spring 2022.

Processing:

Crown Informatics will send a file with a children and young people asthma study ID and the requisite identifiable information (NHS number, date of birth, postcode, admission and discharge date) for each patient included in the NACAP audit to NHS Digital for the patient cohorts.

Cohort 1 (approx size 8500) patient identifiers will be provided to NHS Digital once this agreement becomes active then 2019/20 and 2020/21 HES APC and latest available for Civil Registration Deaths (secondary care cut) pseudonymised data for cohort 1 will be disseminated as soon as possible.

Cohort 2 patient identifiers will be provided to NHS Digital once available, likely mid-2022 then 2021/22 and latest available HES APC and latest available Civil Registration Deaths (secondary care cut) pseudonymised data for cohort 2 only will be disseminated by late 2022. The size of the cohort is expected to be approximately 10,000 – 13,000, although the final figure will only be known in mid-2022.

The following steps will be processed for each cohort, once provided to NHS Digital.

For each cohort, NHS Digital will link an individual’s HES and Civil Registration (death) data to create a pseudonymised file, before securely sending this to Imperial College London.

NHS Digital will pseudonymise the linked data (NHS number replaced with children and young people asthma audit ID; postcode reduced to LSOA (Lower Super Output Area) and date of birth transformed to age at admission; date of death will not be pseudonymised but remain in the file in full and sent to Imperial College where analysis relating to outcomes (readmission and mortality) will be carried out.

Once Imperial College have received pseudonymised data from NHS Digital, using a children and young people asthma audit ID, they will link:
• HES data for the cohort with a children and young people asthma audit ID
• Mortality data for the cohort with a children and young people asthma audit ID

Imperial College London will analyse the data for audit purposes as directed by HQIP/NHSE (the data controllers):
• To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohorts of patients included in the national children and young people asthma audit.
• To add to the richness of the original dataset, by analysing data on co-morbidities.

Imperial College London are commissioned by HQIP to perform complex statistical analysis for the purposes of national clinical audit reporting. To this end they require HES linked data (for derivation of readmission rates and comorbidity data) and mortality linked data (for mortality analysis).

Imperial College London will send the unsuppressed analysed aggregated national and hospital level data to the Royal College of Physicians (RCP). The RCP team will then input the analysed national aggregated level data into the national outcomes report (with small numbers suppressed, in line with HES analysis), and analysed aggregated hospital level data into hospital level outcomes reports. It is important for the RCP to receive unsuppressed data as site level reports with unsuppressed data will also be produced and sent to hospital teams to support them with quality improvement. In addition, unsuppressed data will also be used to support hospital teams with any queries they may have regarding hospital reports.

Crown Informatics will make these hospital level reports available via the audit web tool (access to the web tool is password protected). Please note, each hospital will only be able to view their own hospital level data, benchmarked against the national result (after they log-in to the web tool). In other words, hospitals will not be able to view the readmission and survival rates at other hospitals; this will not be made public. Only data that has emanated from the hospital will be returned to the hospital.

The following analyses will be undertaken by Imperial College London on behalf of the RCP:
• The proportion of patients who died within 30 days of index admission and 90 days of index admission
• The reasons for cause of death within the 30 days of index admission and 90 days of index admission
• The proportion of patients readmitted within 30 days of index discharge and 90 days of index discharge
• The reasons for cause of readmission within 30 days of index discharge and 90 days of index admission
• Whether patients with comorbidities were more likely to be readmitted within 30/90 days of index discharge and more likely to die within 30/90 days of index admission
• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on readmission and/or mortality at 30 and/or 90 days.

Data provided under this application is not being matched to any other sources, other than the audit cohort data collected for the children and young people asthma audit (to which the linkage is being made), and the equivalent datasets in Wales for outcomes reporting.

The data processors/data controllers involved in this request will not attempt to re-identify individuals.

All individuals with access to record-level data are employed by Imperial College London or the Royal College of Physicians.

No record-level data falling under this agreement will be shared with any third party. Employees of all the data processor are appropriately and regularly trained in appropriate information governance, data protection and confidentiality.

Imperial College London has access to record level data in pseudonymised form under this agreement. Details of how the data is being protected by Imperial College are below:
• The Imperial offices are protected by CCTV, electronic key card access and strong high security locks. Electronic data processing assets are physically and electronically secured.
• Access to data is carried out by named, trained, and certified individuals.
• Access to data is either via secure VPN firewalled networks using secondary application layer security or on encrypted internal computer hard drives in locked offices. - Imperial college London – Silwood Park campus. Buckhurst Rd, Berkshire, SL5 7PY

NHS Digital reminds all organisations party to this agreement of the need to 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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).

National Asthma and COPD Audit Programme (NACAP): Outcomes of patients included in the adult asthma clinical audit (patients with asthma attacks discharged from hospitals between 1/11/18 -31/03/19 and 1/04/19 - 31/03/20) — DARS-NIC-357479-S6C7T

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, Yes, No (Section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive, and Non-Sensitive

When:DSA runs 2020-08-13 — 2023-08-12 2021.06 — 2024.03.

Access method: One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. Civil Registration (Deaths) - Secondary Care Cut
  2. HES:Civil Registration (Deaths) bridge
  3. HES-ID to MPS-ID HES Admitted Patient Care
  4. Hospital Episode Statistics Admitted Patient Care
  5. Civil Registrations of Death - Secondary Care Cut
  6. Hospital Episode Statistics Admitted Patient Care (HES APC)
  7. Civil Registrations of Death

Objectives:

This data sharing agreement relates to the secondary care adult asthma clinical element of the National Asthma and COPD (chronic obstructive pulmonary disease) Audit Programme (NACAP). The adult asthma audit has been running since 1 November 2018 and reports on care processes provided in the acute hospital setting such as: oxygen prescription, specialist respiratory review, Peak Expiratory Flow (PEF), the administration of systemic steroids and/or Beta 2 agonists and treatment at discharge.

Aim
The aim of this agreement is to link data collected in the Adult Asthma Audit to hospital readmission's (HES Admitted Patient Care) and mortality data (civil registration – deaths). This will form an outcomes report for the programme and allow organisations to consider what happens to patients in the period after discharge from hospital.

Legal Basis Justification:
HQIP and NHS England both rely on the Article 6 (1) (e) legal basis under GDPR - "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". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.

HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.

NHS England rely on Article 9(2)(h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance.

How data requested will achieve the aim identified
National Asthma and COPD Audit Programme (NACAP) is requesting information about the cohort of audited patients that arrived at hospital on or after 1 November 2018, who were discharged by 31 March 2019 and patients discharged between 1 April 2019 and 31 March 2020:
• Mortality within 30 days of index arrival and 90 days of index arrival (index arrival referring to the date recorded on the audit web tool of the patient’s arrival to hospital).
• Cause of mortality within 30 days of index arrival and 90 days of index arrival
• Readmission within 30 days of index discharge and 90 days of index discharge (index discharge referring to the date recorded on the audit web tool of the patient’s discharge from hospital).
• Cause of readmission within 30 days of index discharge and 90 days of index discharge
• All diagnosis codes for the audited patients to carry out analysis on readmissions and mortality in relation to comorbidities.

The NACAP have collected data on the healthcare provided to these patients through the audit data collection process and need to demonstrate whether or not this has resulted in good or bad outcomes, such as readmission to hospital or death (i.e. the need for NHS Digital HES APC and Civil Registration – deaths, data) . There is no alternative way of achieving the purpose of this application as care processes will not be linked to other outcomes at this stage.

Background
The adult asthma audit workstream is one of five workstreams under the National Asthma and COPD Audit Programme (NACAP):

• COPD audit
• Adult asthma audit
• Children and young people asthma audit
• Pulmonary rehabilitation audit
• Wales Primary care audit

The COPD audit has received linked outcome data under the programme previously, specifically under NHS Digital reference: DARS-NIC-349273-T3L4K-v4.13 for patients admitted to hospital with a COPD exacerbation.

The current agreement differs from that referenced above as it is requesting outcome data for the adult asthma audit for patients of 16 years and older that are admitted to hospital with an asthma attack. For context, separate DARS request will be made for the children and young people asthma audit, but both the primary care audit and pulmonary rehabilitation audit will not be requesting NHS Digital data at this point in time.


Relationship between this data request and wider projects
Data requests are also sent to the following bodies in order to report on outcomes for the audit cohort:
• NHS National Services Scotland (eDRIS) for National Records of Scotland data and Information Services Division (ISD) Scotland data
• NHS Wales Informatics Service for Patient Episode Database for Wales (PEDW) data (readmissions and diagnosis data only, as mortality data for Wales will be sourced via this NHSD application from ONS datasets)

The data requested from NHS Digital will be linked to patients whose information has already been submitted to the adult asthma national clinical audit. NACAP produces clinical audit reports based on the data submitted by NHS trusts, and this will be followed by reports based on the outcomes data requested in this agreement (and from NHS National Services Scotland and NHS Wales Informatics Service), demonstrating how the cohort fared during the follow up period.
Two rounds of national outcomes reporting are due to take place for the adult asthma audit, covering the following two cohorts:

1. 30- and 90- day outcomes of patients that arrived at hospital on or after 1 November 2018 and were discharged by 31 March 2019.
2. 30- and 90-day outcomes of patients that have arrived at hospital hospital between 1 April 2019 and that were discharged by 31 March 2020.

The data requested in this agreement will be presented as part of national clinical audit reporting, specifically under the adult asthma audit workstream. The data will also be used to create hospital-level outcomes reports, presenting aggregate hospital-level mortality data (30-days and 90-days, as well as cause of mortality) and readmissions data (number of readmissions within 30 days, as well as reason for readmission). Again, these reports are specific to the adult asthma audit workstream.

Data subjects
The data subjects make up two cohorts:
Cohort 1
Data subjects are patients aged 16 years old and over who were admitted to hospital adult services with a primary diagnosis of asthma attack on or after November 2018 and discharged by 31 March 2019, whose details have been entered into the adult asthma clinical audit data collection. The size of this cohort is 10,242 data subjects.
Cohort 2
The size of second cohort of patients aged 16 years old and over who were admitted to hospital adult services with a primary diagnosis of asthma attack on or after the 1 April 2019 and discharged by 31 March 2020 cohort is 19,360 data subjects

As agreed in CAG approval (reference: CAG 8-06(b)/2013), Crown Informatics will send identifiers for two separate cohorts. The identifiers to be sent will be:
• NHS number
• Date of birth
• Postcode
• Date of death (if died as an inpatient)
• Gender

Crown Informatics are not listed as a processor in this agreement as they will not be processing any NHS Digital disseminated data.
Arrival and discharge date as well as a unique identifier will also be sent.

Data required
The following data is required, in order for the analysis team to report on readmission's, mortality, associations between likelihood of mortality and readmission with comorbidities:
• Hospital Episode Statistics Admitted Patient Care dataset
o Date of admission
o Method of admission
o All diagnosis codes
o Date of discharge
o Destination on discharge
o Method of discharge
o Encrypted HESID
o Date episode ended
o Record identifier
o Episode order
o Date episode started
o Episode status
o Match Rank
o Primer operative procedure codes
o Provider code – 3 character
o Age at start of episode
o Study ID



• Civil Registration (Deaths) – Secondary Care Cut dataset
o Original underlying cause of death
o Date of death
o Match rank
o Encrypted HES ID
o Study ID

The data will link the HES/civil registration dataset with the data received from the NACAP adult asthma audit dataset.

The data requested needs to include up to the 90 days following the last eligible discharge date for the audit cohort (i.e up to 90 days following 31 March 2019). Therefore:
the data requested for the 1 November 2018 – 31 March 2019 cohort (cohort 1) should span from 1 November 2018 up to 30 June 2019 and the data requested for the 1 April 2019 -31 March 2020 cohort (cohort 2) should span from 1 April 2019 – 30 June 2020.

Justification for datasets requested
The NACAP requires the data requested from the HES APC dataset in order to understand what proportion of the audit cohort were readmitted to hospital up to 90 days following their audit index discharge, what the reason for their readmission was and what other co-existing diagnoses these patients had. The NACAP also requires the data requested from the Civil Registration (Deaths) – Secondary Care Cut in order to understand what proportion of the audit cohort died up to 90 days after their audit index arrival and what the reasons for death was.


Justification for the level of data requested
The data will be returned in record-level pseudonymised form to Imperial College, who will then match the data to the audit dataset and carry out analysis. Imperial requires record level data to track individual patient outcomes (readmissions and mortality). Analysed, aggregate unsuppressed data will then be provided to the Royal College of Physicians team (listed as a processor) for reporting in. Suppression will then take place on aggregate data for the national report for small numbers, as per HES analysis guidelines. For hospital level reporting, small numbers at the level of the hospital remain unsuppressed (as the hospital holds the raw data for their audit cohort).

Justification for the number of years requested
Only linked data for the 1 November 2018 to 30 June 2019 period (cohort 1) and 1 April 2019 to 31 March 2020 period (cohort 2) is requested. Please note that this is only for patients captured in the audit, not all eligible patients.

Justification for the geographical spread of the data requested
This request covers the geographic spread of the patients included in the national adult asthma audit in order to link with longer-term outcomes for this same cohort.

Confirmation of no alternative, less intrusive ways of achieving the purpose
There are no alternative, less intrusive ways of the achieving the purpose of this request. The adult asthma audit dataset does not collect information on longer term outcomes of patients, or comorbidities; the adult asthma audit dataset is specific to the care provided to patients treated for a particular admission to hospital for an asthma attack.

Data minimisation
Only linked data on the cohort of patients collected as part of the national adult asthma audit for a specific period i.e patients admitted to hospital from 1 November 2018 and discharged by 31 March 2019 (cohort 1) and patients admitted to hospital from 1 April 2019 and discharged by 31 March 2020 (cohort 2) is requested. In addition, The NACAP is requesting readmissions data up until 90 days post audit index discharge date, and mortality data up until 90 days post audit index arrival date, but no further.

Healthcare Quality Improvement Partnership (HQIP) and NHS England are the joint data controllers for this request.
There are two organisations involved in the processing of this request:
• Imperial College London
o the primary data processor who receives the linked data from NHSD and processes the data once it has been combined (by Imperial College London) with the adult asthma audit data.
• Royal College of Physicians
o a secondary data processor who incorporates analysed data into reports and interprets the findings and data controller.

Other organisations involved in the wider project
Once the national audit report has been drafted (data included is aggregated, with small number suppression) it is reviewed by representatives of other organisations who are members of NACAP governance groups (NACAP Board members and NACAP asthma advisory group members). Other than the aggregated data, these organisations will not have access to the NHS Digital datasets and do not have any say in how the data is used or processed. Group members represent:
• NHS professionals (ie consultants, respiratory nurses)
• Charities (ie British Lung Foundation, British Thoracic Society, Asthma UK
• Other stakeholder organisations/professional bodies (e.g Getting It Right First Time)
• Patient representatives who have asthma and/or COPD
Following a period of review, the national report is submitted to the commissioner, and subsequently the funder, for sign-off and approval for publication. Please note that reports are always under embargo until funder approval publication of the report.


Other funders/commissioners involved and the nature of their role
The Healthcare Quality Improvement Partnership are the NACAP commissioner, whilst NHS England, the Welsh Government and Scottish Government are the NACAP funders.
The role of HQIP as the commissioner in this request is as follows:
• They mandate the need for NACAP to produce outcomes reports across the programme.
• They are only involved in the request itself at the end stage when the national report is drafted. At this stage they review the report and provide comment.
The role of NHS England, the Welsh Government and Scottish Government as the funders is as follows:
• They review the national report, following submission and acceptance of the national report to HQIP.
• The funders provide sign-off of the national report for publication (please note, hospital level reports are only provided to hospital teams on publication of the national report,and are not reviewed by either the commissioner or funders).

Expected Benefits:

The adult asthma audit collects information on the processes of care provided to patients who are admitted to hospital for asthma attacks. Care is audited against national guidelines and standards, namely, National Institute of Health and Care Excellence (NICE) asthma guidelines and British Thoracic Society guidelines on the management of asthma. The data collected as part of the audit by hospital teams provides useful information on what happened during the admission but does not provide further information on longer-term outcomes following discharge.

The data requested in this application will therefore support the audit to measure the impact of admission for an asthma attack on readmissions and mortality, thereby generating greater impact for the audit and its aims to improve key processes of patient care (such as provision of asthma care bundles on discharge). This information will generate important knowledge that can inform the allocation of resources for asthma care in hospitals, leading to better commissioning and value for money within the NHS. This information is also particularly important given that respiratory disease, including asthma, features within the NHS Long-term Plan, which is driving to improve care for major health conditions (NHS Long Term Plan, 2019).

In addition, by requesting data on the rate of patient co-morbidities, the NACAP can allow for more accurate risk assessment. This information will enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have.
For example, the 2017 NACAP COPD outcomes report reported the following outcomes:
Patients with comorbidities were more likely to be readmitted within both 30 and 90 days of index discharge.
- Patients with a Charlson comorbidity index (CCI)* of 1 were 11% more likely to be readmitted within 30 days (AOR: 1.11 [95% CI: 1.04–1.19]) and 19% more likely to be readmitted within 90 days (AOR: 1.19 [95% CI: 1.12–1.26]) of index discharge than a patient with no comorbidities.
- Patients with a CCI of 6 or more were 73% more likely to be readmitted within 30 days (AOR: 1.73 [95% CI: 1.44–2.07]) of index discharge and 52% more likely to be readmitted within 90 days (AOR: 1.52 [95% CI: 1.28–1.80]) than a patient with no comorbidities.
*The Charlson comorbidity index predicts the 10-year mortality for a patient who may have a range of comorbid conditions

The NACAP aims to use outcomes data data to report on outcomes of adult asthma patients in a similar way.
The data requested will support the NACAP’s Quality Improvement work, whereby data is used to support teams to improve care. With subsequent releases of linked data, the NACAP will continue to produce annual national and hospital-level reports detailing patient outcomes (i.e. mortality and readmissions) to allow sites to understand the extent to which their data compares to the national average and, subsequently, to inform local quality improvement initiatives and service development. Regular outcomes reporting on an annual basis will also allow hospitals to monitor trends in patient outcomes.

How dissemination is in the public interest
According to data sources from 2016/17, there were 77,124 admissions to hospital for asthma in the UK and in 2017 and 1,484 people died from an asthma attack in the UK (Asthma UK, 2019). There are also 4.3 million adults currently receiving treatment for asthma (Asthma UK, 2019).

The National Review of Asthma Deaths (NRAD), which reviewed the circumstances surrounding asthma deaths occurring between February 2012 and January 2013, identified factors that could have avoided death in relation to health professional’s implementation of asthma guidelines in 46% of deaths and in relation to patients, their families and the environment in 65% of deaths (e.g. tobacco smoking) (NRAD, 2014).

The data requested is therefore of public interest given that asthma is a common condition, impacting a significant proportion of the UK population as well acknowledgement of areas for improvement in asthma care to improve patient outcomes (as defined by the NRAD report (NRAD, 2014)).

Awareness of what patients should expect from their care provider, and how their local provider Trust/Board is performing, can help people with asthma to insist on better quality care.

How outputs will achieve stated purposes
The national outcomes report is important in understanding longer term outcomes for the cohort of patients whose care during their hospital stay was reported on nationally. The national report will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care.

Hospital-level outcomes reports can be used by hospital teams to compare their performance against the national and devolved nation results. Each additional annual outcomes report can then be used by hospitals to compare whether patient outcomes have improved over time.

The reports and supporting infographics can be used by patients and patient groups to communicate with their care provider if their care is not meeting the expected standards or if the service appears to be performing lower than expected.

The adult asthma audit is part of a wider programme of asthma and COPD audits which also includes and quality improvement workstream. The NACAP works closely with organisations such as Asthma UK and British Lung Foundation to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health).

Likely action/change/decision as a result of the outputs
The reports must be addressed by all NHS provider services, as part of Quality Accounts. In between reports, they are expected to implement any relevant recommendations and improve the quality care by carrying out a local gap analysis and making changes to service provision. NACAP runs Quality Improvement workshops which clinical teams can use to develop their quality improvement activity.


Magnitude of the impact
Whilst it is unknown what the magnitude of the impact of the dissemination under this application will be, the NACAP knows that from the latest available data from Asthma UK, there were 77,124 admissions to hospital for asthma (in 2016/17), and 1,484 people died (in 2017) from an asthma attack in the UK. The potential numbers of patients that could be affected by positive change in the provision of asthma care (an expected outcome of audit reporting) could therefore be high. Improvement in outcomes following the first dissemination of data under this agreement would be measured in subsequent national reports. The next annual outcomes report would be expected for publication in January 2021.


Recipients of the benefit
NHS service providers will achieve the benefit. They will use the data provided about their activity to make changes, where necessary, to the service they provide to their patients. The 2017 NACAP COPD outcomes report was concluded with a number of recommendations for providers such as
- Facilitate working across traditional specialty and organisational boundaries, to improve optimal identification and management of multimorbidity in people living with COPD and reduce the risk of readmission.
- Embed the COPD audit into everyday practice and use real-time data feedback to implement local QI initiatives to address readmission rates.
- Mortality rates remain high. Apply evidence-based interventions to treat and prevent COPD exacerbations in a timely manner in order to impact positively on survival.

Once the data for adult asthma patients has been analysed and reviewed, the audit aims to use outcomes data provider recommendations to improve adult asthma patient outcomes in a similar way.


Measurement and achievement of the benefit
The benefit will be measured in future cycles of data collection and clinical report production and also by measuring changes of patient outcomes in future reporting. The NACAP would expect change to start shortly after publication of the report and within 3 years aims to improve process reliability of delivery of key aspects of asthma care from current levels to a level where all aspects of high quality care, as set out in National Asthma Guidelines, are delivered in 80% of patients. If this is achieved, NACAP would aim to see a reduction in hospital admissions and a reduction in re-admissions following a discharge from hospital of 20%. It would also be hoped to see a reduction in mortality of a similar magnitude.

References:
1. NHS Long Term Plan (2019). Available from: https://www.longtermplan.nhs.uk/online-version/chapter-3-further-progress-on-care-quality-and-outcomes/better-care-for-major-health-conditions/respiratory-disease/
2. Asthma UK (2019). Available from: https://www.asthma.org.uk/about/media/facts-and-statistics/
3. National Review of Asthma Deaths (2014). Available from: https://www.rcplondon.ac.uk/projects/national-review-asthma-deaths

Outputs:

Outputs as a result of the data processing
Following analysis of the linked data, the NACAP will produce a national outcomes report and hospital-level outcomes reports. The data may also be used in abstracts and presentations used at relevant meetings and conferences hosted in the UK and abroad with audiences made up of respiratory professionals in the medical field. Such events include but are not limited to:
• British Thoracic Society (BTS) Winter Meeting
• Primary Care Respiratory Society UK (PCRSUK) Annual Conference
• Royal College of Paediatrics and Child Health (RCPCH) Conference
• European Respiratory Society Congress


Level of data contained in outputs

National adult asthma audit outcomes report
The national outcomes report will provide national-level aggregated information. Small numbers will be suppressed, as per HES analysis guidelines.

Hospital-level adult asthma audit outcomes reports
The hospital-level outcomes report differs from the national outcomes report; a report for each individual hospital is created and uploaded to the web tool for the respective hospital to download. These reports are therefore accessible only to staff at the respective hospital and are not made available publicly. They provide hospital-level (site-level) aggregated information which is unsuppressed (given that the original data on the patients were collected by the respective hospital). In addition, this will be provided alongside data from the national report (suppressed where required) for comparison.

Dissemination and communication approach
The following methods of dissemination will be used for the national adult asthma outcomes report:
• The report will be made available on the following websites:
RCP website - https://www.rcplondon.ac.uk/projects/national-asthma-and-copd-audit-programme-nacap-secondary-care-workstream-adult-asthma
NACAP website – Hosted by Crown Informatics - https://www.nacap.org.uk/nacap/welcome.nsf/reportsAA.html
HQIP - https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.Xwb6WihKjIV
• Launch emails to relevant audit web tool users from registered hospitals across the country.
• Launch communications and briefings with stakeholder organisations (e.g. Asthma UK, British lung Foundation) and NACAP governance group members to further support their policy work
• Launch communications over social media (Twitter)
• Via conferences and events at which NACAP has a presence (e.g. British Thoracic Summer/Winter meetings)

The national outcomes report is important in understanding longer term outcomes for the cohort of patients whose care during their hospital stay was reported on nationally. The national report will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care.

As an example, the COPD audit is the first audit under the programme to produce a national outcomes report, the most recent of which is available at: https://www.rcplondon.ac.uk/projects/outputs/copd-working-together-clinical-audit-2017and is provided as a supporting document in the evidence section of this application.
The following methods of dissemination will be used for hospital-level adult asthma outcomes reports:
• Notification to relevant web tool users from 170 hospitals (the number that participated in this round of audit data collection) across the country. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).
• Hospitals will be encouraged to review their data in ongoing communications as relevant under the audit programme.
• Note: these reports do not get disseminated further, therefore this is the only method by which these hospital-level reports are launched

Target dates for outputs
The first national and hospital-level reports due for publication under this application are expected to be published in winter 2020.

The second round of national and hospital-level reports are due for publication under this application are expected to be published in Spring 2021.

The target dates for the production of the national adult asthma outcomes report, and hospital-level adult asthma outcomes reports are end of winter 2020 (cohort 1)and spring 2021 (cohort 2).

Processing:

Crown Informatics will send a file with an adult asthma audit ID and the requisite identifiable information (NHS number, date of birth, gender, date of death if applicable and full postcode) for each patient included in the NACAP audit to NHS Digital for both cohort 1 (patients that arrived at hospital on or after 1 November 2018 and were discharged by 31 March 2019) and cohort 2 (patients that were discharged from hospital between 1 April 2019 and 31 March 2020).

Flow of data out of NHS Digital
NHS Digital will link an individual’s HES and Civil Registration (death) data to create a bridge file, before sending this to Imperial College London.
NHS Digital will pseudonymise the linked data (NHS number replaced with adult asthma audit ID; postcode reduced to first four digits; and date of birth transformed to age at time of audit; date of death will not be pseudonymised) and sent to Imperial College where analysis relating to outcomes (readmission and mortality) will be carried out.

Once Imperial College have received data from NHS Digital, using an adult asthma audit ID, the College will link:
-HES data for the cohort with an adult asthma audit ID
-Mortality data for the cohort with an adult asthma audit ID

Imperial College London will analyse the data for audit purposes as directed by HQIP:
• To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohorts of patients included in the national adult asthma audit.
• To add to the richness of the original dataset, by analysing data on co-morbidities.

Imperial College London are commissioned by HQIP to perform complex statistical analysis for the purposes of national clinical audit reporting. To this end they require HES linked data (for derivation of readmission rates and comorbidity data) and mortality linked data (for mortality analysis).

Imperial College London will send the unsuppressed analysed aggregate data to the Royal College of Physicians (RCP). The RCP team will then input the analysed national aggregated level data into the national outcomes report (with small numbers suppressed, in line with HES analysis), and analysed aggregated hospital level data into hospital level outcomes reports. It is important for the RCP to receive unsuppressed data as site level reports with unsuppressed data will also be produced and sent to hospital teams to support them with quality improvement. In addition, unsuppressed data will also be used to support hospital teams with any queries they may have regarding hospital reports.

Crown Informatics will make these hospital level reports available via the audit web tool (access to the web tool is password protected). Please note, each hospital will only be able to view their own hospital level data, benchmarked against the national result (after they log-in to the web tool). In other words, hospitals will not be able to view the readmission and survival rates at other hospitals; this will not be made public. Only data that has emanated from the hospital will be returned to the hospital.


How the data is processed at each stage
Data flow stage 1: Crown sends identifiable data (NHS number, DOB, Date of Death if applicable. Postcode & Gender), along with audit ID, to NHSD for linkage purposes CAG section 251 approval - CAG 8-06(b)/2013/
• Identifiers are collated and sent to NHSD for the cohort of patients included in the audit in order to support linkage. This will be done for both cohort 1 (patients that arrived at hospital on or after 1 November 2018 and were discharged by 31 March 2019) and cohort 2 (patients that were discharged from hospital between 1 April 2019 and 31 March 2020).


Data flow stage 2: NHSD link data and provide HES APC & Civil Registration (deaths) data for audit cohort
• NHSD link the identifiable data provided by Crown Informatics to the Hospital Episode Statistics (HES) Admitted Patient Care dataset and Civil Registration (Deaths) – Secondary Care Cut in order to provide linkage on readmissions, mortality and comorbidities. At this stage, the identifiers are also pseudonymised as follows:
a. Date of Birth changes to age
b. Postcode changes to Lower Layer Super Output Area
c. NHS numbers are removed and replaced with study ID

Data flow stage 3: Imperial College receive pseudonymised data carried out spot checks and match pseudonymised linked data to existing clinical audit dataset for analysis.

The following analyses will be undertaken by Imperial College London on behalf of the RCP:
• The proportion of patients who died within 30 days of index admission and 90 days of index admission
• The reasons for cause of death within the 30 days of index admission and 90 days of index admission
• The proportion of patients readmitted within 30 days of index discharge and 90 days of index discharge
• The reasons for cause of readmission within 30 days of index discharge and 90 days of index admission
• Whether patients with comorbidities were more likely to be readmitted within 30/90 days of index discharge and more likely to die within 30/90 days of index admission
• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect of readmission and/or mortality at 30 and/or 90 days.

Data flow stage 4: Royal Collage of Physicians (RCP) receives aggregated unsuppressed data from Imperial and input that into reports (national and hospital-level reports)
• The analysed data received from Imperial College London is provided in aggregate, unsuppressed form at both national and hospital level to the RCP.
• For the national outcomes report, small numbers will be suppressed, as per HES analysis guidelines.
• For hospital level outcomes reports, no suppression occurs at the level of the hospital (as the raw audit data originated from the hospital and the reports are only made available to individual hospitals and are not made publicly available).

Data Linkages
Data requested under this application is matched to the adult asthma audit cohort data collected through the audit.

This agreement requests for NHS Digital to return pseudonymised data for the purposes of linkage taking place as follows:
a. Date of Birth changes to age (years)
b. Postcode changes to Lower Layer Super Output Area
c. NHS/Community Health Index (CHI) numbers are removed and replaced with study ID

Imperial College London will provide the Royal College of Physicians with anonymised, unsuppressed aggregate level data for reporting. Data will be transferred to the RCP in unsuppressed form, but small numbers will be suppressed in national reporting, in line with HES analysis. These steps mitigate the risk of re-identification of individuals in publications. Hospital level reports will be produced with unsuppressed data and hospital teams will only be able to see the data for their own hospital.
Data provided under this application is not being matched to any other sources, other than the audit cohort data collected for the adult asthma audit (to which the linkage is being made), and the equivalent datasets in Wales and Scotland for outcomes reporting.

The data processors/data controllers involved in this request will not attempt to re-identify individuals.

All individuals with access to record-level data are employed by Imperial College London or the Royal College of Physicians. No record-level data falling under this agreement will be shared with any third party. Employees are appropriately trained in data protection and confidentiality.

How data is being accessed
Imperial College London has have access to record level data in pseudonymised form under this agreement. Details of how the data is being accessed by Imperial College is below:

The Imperial offices are protected by CCTV, electronic key card access and strong high security locks. Electronic data processing assets are physically and electronically secured.

Access to data is carried out by named, trained, and certified individuals. Access to data is either via secure VPN firewalled networks using secondary application layer security or on encrypted internal computer hard drives in locked offices.

National Chronic Obstructive Pulmonary Disease (COPD) Audit (Pulmonary Rehabilitation) - Linked Outcome Data — DARS-NIC-25780-T1F4G

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Consent (Reasonable Expectation))

Legal basis: Health and Social Care Act 2012 – s261(2)(c)

Purposes: No (Academic)

Sensitive: Non-Sensitive

When:DSA runs 2019-01-03 — 2021-02-28

Access method: One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP)

Sublicensing allowed: No

Datasets:

  1. Civil Registration (Deaths) - Secondary Care Cut
  2. HES:Civil Registration (Deaths) bridge
  3. Hospital Episode Statistics Admitted Patient Care
  4. Civil Registrations of Death - Secondary Care Cut
  5. Hospital Episode Statistics Admitted Patient Care (HES APC)

Objectives:

To create a linked data set combining COPD Audit Rehabilitation Data, HES Admitted Patient Care Data and Civil Registration Mortality data will be analysed leading to the production of aggregated reports that support Pulmonary Rehabilitation clinical audit element of the National Chronic Obstructive Pulmonary Disease (COPD) audit program. These reports will be used to enhance the already published report series (Pulmonary Rehabilitation: Time to breathe better).

This data set will create a comprehensive picture of the patient care pathway for people with COPD who have undergone Pulmonary Rehabilitation. This will allow analysis on the impact of Pulmonary Rehabilitation on a patient’s care pathway in a way that no single dataset would be capable of. With this data set it is possible to investigate the impact of Rehabilitation Programmes on both readmissions and mortality.

This series of reports will be used to improve service design and commissioning processes providing improved access and delivery of Rehabilitation services to patients as part of the overall National Chronic Obstructive Pulmonary Disease (COPD) audit programme. The audit supports the Department of Health’s aim to improve the quality of services for people with COPD, measuring and reporting on the delivery of care as defined by guidance standards. More detail on what is included in these reports can be found in the ‘specific outputs expected’ section.

The Audit programme was commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme (NCA) and it is managed by the Royal College of Physicians (RCP). Previously the NHS Digital Clinical Audits and Registries Management Service (CARMS) team acted as a data processor for this application; however now that the Royal College of Physicians hold the necessary data NHS Digital's role as a data processor has ended. NHS Digital are therefore not listed as a data processor for this version of the application.

Yielded Benefits:

Update February 2019: A number of expected measurable benefits have now been met, these include: 1) Information has been provided specifically to commissioners of care and individual services (local reports) to highlight variation, deficiencies in care and also areas of good practice that deserve recognition. 2) The audit has worked with partners (British Thoracic Society, British Lung Foundation, Royal College of General Practitioners, Primary Care Respiratory Society UK) who have supported change by disseminating findings to respiratory contacts by condensing the findings into key messages with a connection to the impact of not improving services, collecting and disseminating best practice case studies, developing additional guidance (where appropriate) and the signposting to currently available guidance, producing and sharing top tips and information about how to make practical improvements. 3) Data has been presented to the DH directly in order to influence future commissioning guidelines and shared with the Care Quality Commission to inform its Quality Risk Profile. Consortium members from the audit steering group have an active dialogue and involvement in working groups in all these organisations. HQIP are represented on the steering group, and have direct links with the DH as well as CQC who also have representation on the steering group. Achievements using the data already held: - Production of national reports detailing patient outcomes (i.e. mortality and admissions to hospital) – please see: https://www.rcplondon.ac.uk/projects/outputs/pulmonary-rehabilitation-beyond-breathing-better. This included a list of key recommendations to support pulmonary rehabilitation sites, hospitals and primary care practitioners to improve the care they provide to patients, namely: - Healthcare staff should be aware of the association between completion of PR and better patient outcomes, and prioritise the offer of referral of eligible patients during consultations, support eligible patients to complete PR programmes wherever possible. This may require specific targeted interventions. - PR programmes should consider how best to accommodate patients who interrupt programmes as a result of hospital admission, so that they might in due course complete programmes that they have enrolled on. - Healthcare staff should work with patient support organisations and charities to make patients and the public aware of the beneficial health outcomes resulting from completion of PR, so as to encourage patients to seek referral from their clinical teams. - Production of local reports (shared only with the relevant service), to allow them to understand the extent to which their data compared to the national average and, subsequently, to inform local change and service development. - Further supportive tasks conducted based on these findings included: - Workshops and events to support services to improve and change - Creation of a good practice repository (in train) to support sharing of good practice - Work on the web-tool to capture - Presentation of abstracts at the European Respiratory Society, British Thoracic Society, Chartered Society of Physiotherapists, etc. to disseminate the findings of the audit as much as possible

Outputs:

The RCP intended to publish a national supplementary report 7 months after receipt of data (which was released in February 2017). However, due to delays in review processes at HQIP and NHSE (all audit reports must be reviewed multiple times by these funding bodies), the national report was only published in December 2017 (it can be accessed at https://www.rcplondon.ac.uk/projects/outputs/pulmonary-rehabilitation-beyond-breathing-better).

This delay meant that the RCP is still in the process of producing additional outputs detailed in the original application, namely publications in peer reviewed journals. These outputs are essential to a) broadly disseminate important findings regarding the outcomes of people that undergo pulmonary rehabilitation and to: b) inform quality improvement at a local and national level.

As per the original application, the results of the audit programme elements will be fed back to health professionals and broader stakeholder groups. The reports/publications will only present aggregated data, and will not include patient level data (anonymised or otherwise). When reporting, there will never be any information that can be linked back to an individual patient by virtue of it being a unique case/experience (either nationally or within a locality).

The outcomes to be assessed in these outputs are:

• Number of admissions (respiratory and non-respiratory causes)
• Time to first admission
• Length of stay and number of bed days
• Survival at 90/180 days post initial pulmonary rehabilitation assessment (using Y/N flags as this is the most critical time-point)
• Survival at 90/180 days post referral to pulmonary rehabilitation (using month and year of death)
• Survival at 90/180 days post completion or drop-out of pulmonary rehabilitation (using month and year of death)

These outputs will complement the national clinical and organisational Pulmonary Rehabilitation reports. Evidence from these reports and other peer reviewed publications suggest that patients are likely to achieve clinically important improvement in health status and require fewer subsequent healthcare visits if they take up and complete Pulmonary Rehabilitation. Despite this, waiting times for Pulmonary Rehabilitation show considerable variation, with significant numbers waiting longer than the recommended 3 months to start a programme.

There is also considerable under-referral of eligible patients with COPD for Pulmonary Rehabilitation. Finally, many people who are referred for Pulmonary Rehabilitation either do not enrol or do not complete treatment. In order to optimise care for patients, this range of reports will produce specific, concrete, targeted information about the impact of Pulmonary Rehabilitation services on key patient outcomes, namely mortality and hospital readmissions.

In summary, by increasing knowledge and awareness of decision-makers, clinicians and patients of the impact of Pulmonary Rehabilitation on outcomes, these outputs will affect change that will improve and standardize access to these services. This could have a considerable impact on the experience and outcomes of patients with COPD.

Aspects of the work outlined above would be published in academic journals and presented at regional, national and international meetings further increasing the impact of the audit and, therefore, helping to ensure its aim to improve care and service delivery for patients with COPD is achieved. These publications and presentations would emerge throughout the audit contract period as analysis is completed.

In terms of journals, these would be respiratory journals in the main (specifically Thorax), however, other examples include: British Medical Journal (BMJ) Open Respiratory Research, Respiratory Medicine, COPD: Journal of Chronic Obstructive Pulmonary Disease and The Lancet.

Processing:

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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Previously the NHS Digital CARMS team acted as a data processor for this application; however now that the Royal College of Physicians hold the necessary data NHS Digital's role as a data processor has ended. NHS Digital are therefore not listed as a data processor for this version of the application.

• The dataset British Thoracic Society (BTS) supplied to NHS Digitals Clinical Audit and Registries Management Service (CARMS) in August 2015 included identifiable information (NHS number, date of birth, gender and postcode).

• CARMS produced a file with a study ID and the identifiable information (NHS number, date of birth, gender and postcode) which was sent to DARS (the cohort). CARMS also sent DARS the audit 'date of assessment' and 'date of discharge from PR' fields, so that mortality flags (death within 90 and 180 days) can be generated for the RCP.

• NHS Digital produced a file for people identified within the cohort providing all HES records and linked Civil Registration/mortality data. The provided study ID was added to all files – the identifiable information provided was not included in the file. Date of death was replaced by i) month and year of death; ii) 90 and 180 day mortality flags from 'date of assessment' (i.e. Y/N); and iii) if Y to either 90 or 180 day mortality flags, an additional Y/N flag to stipulate if death was prior to discharge from PR (this is not included in HES data).

• This file was sent by NHS Digital to the RCP.

• The RCP will analyse the data and produce national and local reports, as well as journal articles (detailed in ‘specific outputs expected’ section).

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 ie: employees, agents and contractors of the Data Recipient who may have access to that data). All individuals with access to record level data are substantive employees of RCP.

No linkages will take place that aren't mentioned in this agreement.

All outputs will be aggregated with small numbers suppressed in line with the HES analysis guide.

Chronic Obstructive Pulmonary Disease (COPD) Secondary Care Audit — DARS-NIC-349273-T3L4K

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, Anonymised - ICO Code Compliant, No, Yes (Mixed, Section 251 NHS Act 2006, Mixture of confidential data flow(s) with support under section 251 NHS Act 2006 and non-confidential data flow(s))

Legal basis: Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2019-03-01 — 2022-02-28 2018.06 — 2024.03.

Access method: One-Off, Ongoing

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. Civil Registration - Deaths
  2. Hospital Episode Statistics Admitted Patient Care
  3. Civil Registration (Deaths) - Secondary Care Cut
  4. HES:Civil Registration (Deaths) bridge
  5. HES-ID to MPS-ID HES Admitted Patient Care
  6. Civil Registrations of Death - Secondary Care Cut
  7. Hospital Episode Statistics Admitted Patient Care (HES APC)
  8. Civil Registrations of Death

Objectives:

This application relates to the secondary care clinical audit element of the National Chronic Obstructive Pulmonary Disease (COPD) Audit Programme which has been commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). The audit programme, including this secondary care audit, supports the Department of Health’s (DH) aims to improve the quality of services for people with COPD, measuring and reporting the delivery of care as defined by guidance standards. It is included in the list of national audits for inclusion in Trusts’ Quality Accounts and is also included in the NHS Wales Clinical Audit & Outcome Review Plan. The processing for which approval is sought is to allow the analysis and reporting to achieve this aim.

There are four organisations collaborating on this audit:
- HQIP, who are the data controller for this audit programme, determining the purpose and manner to which the data is used.
- Crown Informatics, who are the primary data processor.
- Imperial College London, who are the secondary data processor, processing the data once it has been combined with the COPD audit data by Crown Informatics.
- The Royal College of Physicians, who are the applicant, as well as a secondary data processor, and will advise Imperial College London on clinical elements of the methodology and will interpret the findings.

The secondary care audit changed from a snapshot to a continuous audit methodology in February 2017. Its aim is to capture every admission to hospital for an acute exacerbation of COPD in England and Wales. Currently, 98% of eligible hospitals enter data into the audit and the applicant estimates their case ascertainment rate to be in the order of 50%. With over 50,000 clinical records entered to date, this is by far the biggest dataset of its kind in the world.

In addition to the information collected by hospitals, an element of the audit’s design (and included explicitly in the S251 approval) requires the linkage of audit data to Hospital Episode Statistics (HES) and Office for National Statistics (ONS) data. This is used for the following reasons.

HES data:
- To allow precise calculation of case ascertainment, both at hospital level and nationally. These data will also be used to inform the COPD Best Practice Tariffs (BPT) reporting (see https://copdaudit.org.uk/copd/welcome.nsf/reportsSCbpt.html) and the data provided to the CQC as part of the National Clinical Audit Benchmarking Project (https://www.hqip.org.uk/national-programmes/clinical-audit-benchmarking/).
- To provide reliable data on outcomes, namely readmission rates, for the audit cohort; a proxy of the quality of care and discharge processes received.
- To add to the richness of the dataset, whilst not increasing burden on local sites. More specifically, co-morbidity and parity of esteem information will be sourced from HES.

ONS data:
- To ensure audit based calculations of inpatient mortality are correct and to allow derivation of longer-term (30 and 90 day) mortality data (i.e. outcome data). This will also function as a surrogate for system care, a vitally important consideration for Sustainability and Transformation Partnerships (STPs) and Accountable Care Partnerships (ACPs).

Post-discharge outcomes are increasingly recognised as being important proxies of good inpatient care. Therefore, tracking patients beyond their hospital stay is essential in order to link care processes with outcomes and, subsequently, to influence improvements in patient care.

Yielded Benefits:

Achievements using the data already held: - Calculation of case ascertainment rates for the 2014 snapshot audit, to ensure the integrity and generalisability of the findings. It transpired that there was comparatively poor case ascertainment (in the region of 45%). Hospitals with lower rates were contacted and supportive measures were put in place to improve ascertainment for the 2017 audit (including liaising with NHSE and NHSI re: funding opportunities). - Further supportive tasks (to promote case ascertainment derived from these data) included: 1. Workshops and events to support data capture 2. Creation of a good practice repository to detail how certain hospitals manage to collect data 3. Work on web-tool to reduce the administrative burden of entering a case. - Production of national reports detailing patient outcomes (i.e. mortality and readmissions) - please see: https://www.rcplondon.ac.uk/projects/outputs/copd-who-cares-when-it-matters-most-outcomes-report-2014. This included a list of key recommendations (including improving integration of care and discharge processes) to support hospitals to reduce the high rates of readmissions. - Production of local reports (shared only with the relevant hospital), to allow them to understand the extent to which their data compared to the national average and, subsequently, to inform local change and service development. - Presentation of abstracts at the European Respiratory Society, British Thoracic Society, geriatric medicine meetings, nursing meetings, etc. to disseminate the findings of the audit as much as possible.

Expected Benefits:

As part of the National COPD Audit Programme at the RCP, the continuous secondary care clinical audit has now developed into a comprehensive quality improvement initiative, which combines several elements:

- Description of facilities and practice in different units around England and Wales
- Audit of practice against the NICE quality standards (QS10: https://www.nice.org.uk/guidance/QS10) and guideline for COPD (CG101: https://www.nice.org.uk/guidance/CG101)
- Performance evaluation to support NHS England’s Best Practice Tariff (see https://copdaudit.org.uk/copd/welcome.nsf/reportsSCbpt.html)
- Support for clinical governance in individual hospitals
- Metrics to support the National Clinical Audit Benchmarking project (https://www.hqip.org.uk/national-programmes/clinical-audit-benchmarking/)
- A framework to support local and national audit work
- An infrastructure for scientific and research work
- A resource of specialist information, expertise and networking.

The data requested in this application will support:

- Measurement of the impact of admission due to acute exacerbation of COPD on both short-term outcomes (e.g. inpatient mortality), as well as medium and long-term outcomes (e.g. readmissions at 30/90 days and mortality at 30/90 days). This will generate important knowledge that will inform the allocation of resources for COPD care, leading to better commissioning and value for money.
- More accurate estimation of case-ascertainment (i.e. number and % of acute exacerbation of COPD patients recorded in the audit). Targeted action could be taken to inform hospitals with incomplete case-ascertainment, and this will lead to better future audit and, consequently, to more robust benefits being derived from it.
- Measurement of the rate of patient co-morbidities, including mental health. This will allow more accurate risk-adjustment and also allow for analyses to be conducted regarding parity of esteem. This will enable clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (i.e. value for money).
- This information will all support the programme's Quality Improvement element - whereby data is used to support teams to improve care.

Achievements using the data already held:

- Calculation of case ascertainment rates for the 2014 snapshot audit, to ensure the integrity and generalisability of the findings.
- Production of national and local reports detailing patient outcomes (i.e. mortality and readmissions) to allow sites to understand the extent to which their data compares to the national average and, subsequently, to inform local change and service development

What the applicant hopes to achieve with subsequent releases of data:

- Continued calculation of case ascertainment rates, to ensure the integrity and generalisability of the findings.
- Continued production of national and local reports detailing patient outcomes (i.e. mortality and readmissions) to allow sites to understand the extent to which their data compares to the national average and, subsequently, to inform local change and service development. This will also allow sites to monitor trends in patient outcomes.
- Production and updating of reporting to sites via the audit web-tool.

Outputs:

Publications and outputs using the data to date:

The RCP published a national report based on the linked secondary care/outcome (HES/ONS) data in early 2017, following release of the data by NHS Digital in the summer of 2016. The report can be accessed at https://www.rcplondon.ac.uk/projects/outputs/copd-who-cares-when-it-matters-most-outcomes-report-2014. The report was well received; coverage was provided by the BMJ, Nursing Times, Talk Radio and over 100 regional newspapers.

Local (i.e. hospital level) outcomes reports were also released in 2017. These are not available in the public domain, but were sent directly to audit leads at participating hospitals. These reports provided local data benchmarked against national data, in order for a comprehensive understanding of the quality of care delivered locally to be obtained.

The RCP is still in the process of producing the additional outputs detailed in the original application, namely publications in peer-reviewed journals. These are essential to a) broadly disseminate important findings regarding the outcomes of people admitted to hospital with acute exacerbation of COPD and to; b) inform quality improvement at a local and national level.

Future outputs:

The applicant would intend to produce similar outputs for all subsequent releases of data, more specifically:
- A national ‘outcomes’ report (6 months post release of data)
- Local ‘outcomes’ reports, providing hospital level data benchmarked against the national data (6-8 months post release of data)
- Publications in peer-reviewed journals (post first 2 outputs)
- Please note, Crown Informatics will also make 30 day readmission and survival rates available to hospitals via the audit web-tool (access is password protected).

As per the original application, the results of the audit programme elements will be fed back to health professionals and broader stakeholder groups. The reports/publications will only present aggregated data, and will not include patient level data (anonymised or otherwise). When reporting, there will never be any information which can be linked back to an individual patient by virtue of it being a unique case/experience (either nationally or within a locality).

Processing:

On an annual basis, Crown Informatics will send a file with a COPD audit ID and the requisite identifiable information (NHS number, date of birth, gender and full postcode) to NHS Digital.

NHS Digital will link the data and provide Crown Informatics with:
- HES non-sensitive data for the cohort with a COPD audit ID.
- ONS data for the cohort with a COPD audit ID.
- HES non-sensitive data (date of admission, hospital of admission, date of discharge) for all patients with the following ICD-10 diagnosis codes listed as the primary diagnosis (i.e. in first position): J44.0, J44.1, J44.8, J44.9., in the defined time period.

Crown Informatics will receive data from NHS digital and combine with COPD audit data. This will be pseudonymised (NHS number replaced with COPD audit ID; postcode reduced to first four digits; date of birth transformed to age at time of audit; date of death transformed to month/year of death and 30/90 day mortality flags) and shared with Imperial College London to carry out analysis relating to outcomes (readmission and mortality).

Imperial College London will analyse the data for audit purposes:
1. To estimate the number of acute exacerbations of COPD at both national and individual hospital level that have occurred in the requisite period.
2. To derive outcomes (readmissions at 30 and 90 days; inpatient mortality and mortality at 30 and 90 days) for the cohort of patients included in the national COPD audit.
3. To add to the richness of the original dataset, by analysing data on co-morbidities and parity of esteem provided by HES.

Crown Informatics will also make 30 day readmission and survival rates available to hospitals via the audit web-tool (access is password protected). Please note, each hospital will only be able to view their own hospital level data, benchmarked against the national result (after they log-in to the web-tool). In other words, hospitals will not be able to view the readmission and survival rates at other hospitals; this will not be made public.

Imperial College London are commissioned to perform complex statistical analysis for the purposes of national clinical audit reporting. To this end they require HES linked data (for case ascertainment and derivation of readmission rates) and ONS linked data (for mortality analysis).

The Royal College of Physicans (RCP) will advise Imperial College London on clinical elements of the methodology and will interpret the findings.

All individuals with access to record level data are employed by Crown Informatics, the RCP or Imperial College London. All outputs will be aggregated with small numbers suppressed, in line with the HES analysis guide. No record level data falling under this agreement will be shared with any third-party.

Please note, as the audit is relatively new (it has not yet been running for a year), more regular calculations of case ascertainment are required (to ensure prompt, targeted action can be taken to inform hospitals with incomplete case-ascertainment, which will lead to better future audit and, consequently, to more robust findings). Therefore, in addition to the processing activities outlined above which will take place on an annual basis, the applicant will submit a separate request for NHS Digital to provide Crown Informatics every six months with the following small-number suppressed tabulation:

- HES non-sensitive data (date of admission, hospital of admission, date of discharge) for all patients with the following ICD-10 diagnosis codes listed as the primary diagnosis (i.e. in first position): J44.0, J44.1, J44.8, J44.9., in the defined time period.

This will be processed as outlined above and will allow more timely reporting of case ascertainment figures (nationally and at hospital level).

In previous iterations of this agreement, NHS Digital was a data processor for HQIP, which included processing of data regarding patient care in Wales. NHS Digital are no longer processing this data. Patient Episode Database for Wales (PEDW) data covering patients attending hospital in Wales will be requested separately by the Royal College of Physicians from NHS Wales Informatics Service (NWIS). No record level data from NHS Digital will be shared with NWIS under this agreement or vice versa.

MR1308 - Sentinel Stroke National Audit Programme — DARS-NIC-387635-C9Y0W

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, N, Anonymised - ICO Code Compliant, Identifiable, Yes, No (Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Informed Patient consent to permit the receipt, processing and release of data by the HSCIC, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 - s261(5)(d), Health and Social Care Act 2012 - s261(5)(d); Health and Social Care Act 2012 – s261(2)(c); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a); Health and Social Care Act 2012 – s261(2)(c); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261(5)(c); Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Academic)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2018-06-29 — 2021-03-31 2017.06 — 2023.10.

Access method: Ongoing, One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. MRIS - Flagging Current Status Report
  2. MRIS - Cause of Death Report
  3. MRIS - Cohort Event Notification Report
  4. Hospital Episode Statistics Admitted Patient Care
  5. Demographics
  6. Civil Registration - Deaths
  7. MRIS - Scottish NHS / Registration
  8. Hospital Episode Statistics Admitted Patient Care (HES APC)
  9. Civil Registrations of Death
  10. HES-ID to MPS-ID HES Admitted Patient Care

Objectives:

ONS: The Royal College of Physicians (RCP) is the data processor responsible for producing the CCG Outcomes Indicator Set (CCGOIS) measure of mortality at 30 days for stroke patients. These results are provided to NHS Digital to publish as part of the wider CCGOIS. The results are also provided at team level to provide necessary context on the performance of clinical teams treating stroke patients. As well as reporting on 30 day mortality, there is a need to show survival at other intervals such as at 6 months and 1 year. The outputs of the analysis by RCP will include mortality statistics at different time points and at different levels of granularity and dates of death will be used in statistical modelling. Any data reported on is carefully considered in terms of whether it could be potentially identifiable and advice is given on how the outputs should be interpreted. It is also important that Royal College of Physicians are able to provide the information back to the clinical teams who have treated the patients.

HES: The HES dataset is used to determine the case ascertainment (case ascertainment is a measure of the number of cases reported in the audit, compared to the number of cases identified in HES) of participants of the Sentinel Stroke National Audit Programme (SSNAP), that is, the proportion of coded stroke patients which are recorded in the audit; and identify any readmissions and further strokes, in order to compare quality of care with outcomes for patients. As the outputs of analysis of SSNAP are reported and publically available, the proportion of patients entered into the audit for each hospital team, compared with the numbers in HES, is vital in determining how results are used (for instance, if there is low case ascertainment, the mortality outcomes would not be reported so that there is no potential misrepresentation).

Yielded Benefits:

Case ascertainment information from HES has been used to target trusts who were not achieving good levels of data entry to the audit in previous years, which has resulted in those trusts entering more records onto SSNAP, therefore improving the overall case ascertainment of the audit and reducing potential biases. This results in higher quality data being used for decision making at trust level and nationally. Mortality information has been fed back to trusts in case-mix adjusted models, and outlier trusts have been identified. These trusts were contacted and encouraged to undertake case note reviews of their fatalities to identify areas for improvement. Outlying trusts were also offered a full peer review visit by the Stroke Programme, and a number of outlying trusts have taken up this offer to help identify where improvements in their service need to be made. The ability to adjust for variables such as stroke severity using the SSNAP Civil Registration/Mortality methodology is important, as stroke severity is a very strong predictor of mortality. Statistical analyses of the HES and Civil Registration/Mortality data have looked at variation in stroke care and outcomes based on the presence of other diagnoses, socioeconomic status, and organisational characteristics of the hospitals treating the patients. Some of these analyses have already been published, and others are currently being written up for submission to peer review journals. In 2018 the paper ‘Socioeconomic disparities in first stroke incidence, quality of care, and survival’ was published in The Lancet. It is available here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5887080/. Such analyses have the potential to highlight key areas for improvement and to drive change.

Expected Benefits:

Case ascertainment information will be used to target trusts who are not achieving good levels of audit case ascertainment, this leads to more complete data and more valid results in future audit. Complete audit information is essential for service improvement, and improvements to stroke patient care. HES data is utilised to compare the number of records submitted to the audit, with the number recorded in HES. SSNAP are currently finalising the methodology for determining the number of new stroke admissions per team, which will then be used to better triangulate which teams are submitting fewer patients to the audit than they are recording in HES. The previous years’ HES denominators enabled the audit to target teams with poorer case ascertainment and to chase those teams before submission deadlines in order to maintain the national case ascertainment above 90%. In the latest round of reporting (for Aug-Nov 2016), it was estimated that 90% of routinely admitting teams in England and Wales submitted over 90% of their stroke cases to the audit. The percentage case ascertainment at teams is used to penalise teams with low case ascertainment, and functions as a key driver for high participation levels.
This ongoing process is a key driver to high case ascertainment in the audit – comparing teams to HES has yielded a consistent 90%+ case ascertainment nationally, which is key to ensuring representativeness and usefulness of the audit data. The benefit of this the receipt of HES data is therefore to enable a useful audit dataset, and the use of previous years’ HES has ensured the audit’s reputation as a high quality data source, and enabled audit data to be used to highlight areas of unwarranted variation across the country, to identify key areas for improvement, and for use in a number of parliamentary questions.

Mortality within 30 days of hospital admission is part of Domain 1 of the NHS CCG Outcome indicator set “reducing premature mortality”. CCGs will access the published information and use it to improve services through identification of good and bad practice. This will be of benefit both in terms of better value for money and better patient outcomes. Mortality at CCG level using a casemix-adjusted model has been reported for 3 years now, for 2013/14, 2014/15 and for 2015/16. The CCG OIS mortality measure was last published by SSNAP and by NHS Digital in early 2017. CCG outliers were informed in late 2016 and conversations with the CCG chairs, and medical directors ensued. One CCG was flagged as an outlier, despite none of its constituent hospitals being flagged. This raised a question to be investigated by the CCG as to whether they needed to assess their commissioning of services. The analyses will also help CCGs and STPs in the debate around where services should be reconfigured by enabling the use of appropriately adjusted mortality information.
Outlier CCGs will again be contacted using an outlier processes to discuss where improvements in stroke care are needed in order to benefit both in terms of better value for money and better patient outcomes. The data will be published on the SSNAP website, as well as part of the CCG OIS, and is normally considered for other outputs such as PHE’s CVD profiles, Atlas of Variation etc. Reporting and publishing this information in the future is key to ensuring CCGs with high mortality rates are informed of this, and have the opportunity to improve.

Similarly, trusts will use team level mortality within 30 days of hospital admission to identify trends and good practice, again leading to better patient outcomes. Mortality at team level using a casemix-adjusted model has been reported for 3 years now, for 2013/14, 2014/15 and for 2015/16. In the past year, the mortality outlier for 2015-16 requested a stroke peer review visit to help identify key ways to improve their service. A quality improvement programme is now being implemented in this service, following from a detailed peer review visit.
Outlier teams will again be contacted using an outlier processes to discuss where improvements in stroke care are needed with the Chief Executive, medical director and clinical lead for stroke. This information will be put into the public domain so patients and the public can see which hospitals have poor outcomes, for example through the MyNHS website. A stroke peer review visit will be offered to outlying teams to assist with identifying key areas for improvement and ways to achieve that improvement.

Feeding back mortality information to teams, allows teams to investigate their patient outcomes and put in place ways to improve, for example by investigating patient deaths following the use of thrombolysis.

Statistical analyses investigating longer-term mortality will have the following benefits:
• assessing the real-world benefit of new interventions such as intra-arterial intervention (mechanical thrombectomy) and intermittent pneumatic compression stockings
• tracking changes in mortality trends over time
• monitoring the effect of reconfiguring services
• monitoring the effect of introducing 7-day working
• monitoring the impact of service decommissioning.

Investigating stroke rates and comorbidities using the HES data will be beneficial by:
• reducing the burden of data collection,
• helping identify key areas for quality improvement
• reducing unwarranted variation
• enabling a broader understanding of comorbidity and its impact of the receipt of key processes of care and patient outcomes.

Outputs:

ONS and HES: Indicators will be produced showing the performance of organisations and at national level for the purpose of monitoring and quality improvement, in particular:
• Mortality within 30 days of hospital admission for stroke CCG Outcomes Indictor Set (CCGOIS) at least annually (first publication on 17 December 2014, next publication anticipated to be published by the end of 2017, subject to timely receipt of ONS data from NHS Digital)
• Mortality within 30 days of hospital admission for stroke Team-level mortality results (published in line with CCGOIS and used for contextualising the results). (Team usually equates to a hospital).
• Audit case ascertainment information
• For statistical purposes such as monitoring trends registered individuals at Trusts can access date of death for patients they submit to the audit derived from ONS mortality data.
• As well as reporting on 30 day mortality, there is a need to show survival at other intervals such as at 6 months and 1 year. The outputs of the analysis by RCP will include mortality statistics at different time points and at different levels of granularity and dates and causes of death will be used in statistical modelling. Any data reported on is carefully considered in terms of whether it could be potentially identifiable and advice is given on how the outputs should be interpreted.
• Planned analyses following agreement with our steering group investigating stroke rates and associations with comorbidities recorded in HES to be published in peer-reviewed journals

Processing:

RCP will send cohort information to NHS Digital for linkage, they send NHS Number, Full postcode, Name, and a unique SSNAP ID. As part of the section 251 support, there is a method by which the information is sent to NHS Digital for linkage without the RCP viewing any patient identifiable information.

NHS Digital return;
• Non sensitive pseudonymised HES data with SSNAP ID for patients in cohort
• Non sensitive pseudonymised HES data for patients with a diagnosis of stroke
• Identifiable ONS date and cause of death

RCP combine HES and ONS data with SSNAP data and combine into separate databases; one with SSNAP and ONS data and the other with SSNAP and HES data.

Identifiers are held separately to other data and the pseudonym SSNAP ID is used to identify individual patients. With the exception of date of death, analysts access no identifiers.

Pseudonymised HES Data is then analysed to calculate case ascertainment information for the audit. HES data is also used to validate some of the information collected in the audit. No HES data is stored or processed by Netsolving, all processing is undertaken at the RCP.

Identifiable ONS data is analysed to produce 30 day mortality at CCG level and stroke team level (team usually equates to a hospital). Cause of death is used to disaggregate stroke specific deaths and deaths from other causes.
For statistical purposes such as monitoring trends identifiable ONS death data is also passed back (via the secure webtool hosted by Netsolving) to registered individuals at participating trusts whereby they can access date of death for patients they submit to the audit.
All arrangements for 3rd party access will be controlled through sublicensing agreements and will be for the benefit of health and care; all arrangements will be approved by the HSCIC before data being sent.

All individuals with access to the data are substantive employees of the Royal College of Physicians of London.

MR1346 - National Hip Fracture Database — DARS-NIC-10343-Z3M1B

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, Identifiable, Yes, Anonymised - ICO Code Compliant (Section 251, Section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7); Other-Section 251, Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261 - 'Other dissemination of information'; National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a), Health and Social Care Act 2012 – s261(2)(a); National Health Service Act 2006 - s251 - 'Control of patient information'.

Purposes: No (Academic)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2019-04-01 — 2021-03-31 2017.12 — 2022.05.

Access method: Ongoing, One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

  1. MRIS - List Cleaning Report
  2. Hospital Episode Statistics Admitted Patient Care
  3. Demographics
  4. Hospital Episode Statistics Admitted Patient Care (HES APC)

Objectives:

The National Hip Fracture Database (NHFD) is a clinically led, web-based quality improvement initiative commissioned by the Healthcare Quality Improvement Partnership (HQIP) and managed by the Royal College of Physicians (RCP).
All 182 eligible hospitals in England, Wales and Northern Ireland are now regularly submitting data to NHFD, the largest hip fracture database in the world, with:

• a third of a million cases recorded since its launch in 2007
• over 95% of all new hip fracture cases being documented
• 5,700 records being added every month.
In addition to the information collected by the audit, Hospital Episode Statistics (HES) data is linked to the audit data to provide a richer data set.

HES data is used in this audit to look at patient pathways for people who have experienced a hip fracture. The audit will look at HES episode data for patients and link them together into a ‘super-spell’, this is the whole period of hospitalisation for the patient regardless of which consultant they are under and crossing hospitals where a transfer has taken place.

To ensure The Royal College of Physicians (RCP) can account for all reasons for a sequence of episodes ending, they need to be able to identify when a patient has died, particularly when this occurs unexpectedly during a planned sequence of episodes.

The data will be used to refine case ascertainment algorithms for the audit.
The data will be used to validate and refine casemix risk adjustment models for the audit.

Yielded Benefits:

Publications and outputs using the data to date: NHFD annual report 2016 and 2017 NHFD commissioners report 2016 and 2017 Further results and methods used to derive case-ascertainment, casemix adjusted mortality and HES super-spells have been published by the RCP in the NHFD annual report in September 2017. Achievements from the HES and list cleaning data already held: • Calculation of annual case ascertainment rates to ensure the integrity and generalizability of the national audit findings • Development and validation of a casemix adjustment model to ensure fair comparisons of outcome • Production of performance run charts of mortality to allow sites to monitor trends in patient outcome • Productions of annual summary of casemix adjusted mortality to detect and support outlying sites • Calculated superspell length of stay and detected uncertainties in patient pathways for patients sent to rehabilitation units.

Expected Benefits:

As part of the Falls and Fragility Fracture Audit Programme (FFFAP) within the Clinical Effectiveness and Evaluation Unit at the RCP, the NHFD has now developed into a comprehensive quality improvement initiative and combines several elements:

• description of facilities and practice in different units around the country
• audit of practice against the NICE quality standard for hip fracture (QS16)
• performance evaluation to support Monitor’s Best Practice Tariff (BPT)
• support for clinical governance in individual hospitals
• metrics to support patient safety monitoring
• identification of outlier hospitals in respect of patient outcome
• a framework to support local and national audit work
• an infrastructure for scientific and research work
• a resource of specialist information, expertise and networking.

The data requested in this application will support
• More accurate risk-adjustment when comparing hospital performance, where linkage to HES will allow better measurement and adjustment for patient comorbidity. This would enable clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (value for money)
• Measurement of the impact of hospital hip fracture care on long-term outcomes, where linkage to HES will allow measurement of long-term outcomes such as readmission to hospital and future hip fractures. This will generate important knowledge that will inform the allocation of resources for hip fracture care leading to better commissioning and value for money.

• Measurement of the rate of return to independent living vs. residential care following a hip fracture. This is a key outcome of care. Each of the NHFD and HES database individually have shortcomings that can be overcome by using linked data. This will be useful to clinicians and commissioners involved in design and funding of intermediate, rehabilitation and social care leading to better commissioning and value for money.

• More accurate estimation of case-ascertainment (i.e., number and % of hip fracture patients recorded in NHFD). Targeted action could be taken to inform hospitals with incomplete case-ascertainment this will lead to better future audit and hence more robust benefits derived from it.

Outputs:

Publications and outputs using the data to date:
NHFD annual report 2015
NHFD commissioners report 2015
NHFD mortality supplement 2016

Further results and methods used to derive case-ascertainment, casemix adjusted mortality and HES super-spells will be published by the RCP in the NHFD annual report in September 2016 & September 2017. The results of the other analyses will be published in other NHFD supplementary reports and /or peer-reviewed articles.
RCP publish CCG level outcomes for the Best Practice Tariff and to support the NHS Outcomes Framework and CCG Outcome Indicators Set.

RCP publish provider level outcomes for the Best Practice Tariff.
For statistical purposes, such as monitoring trends, registered individuals at Trusts can access date of death for patients they submit to the audit, derived from ONS mortality data. Run charts and tables are also provided using 30 day survival.

Processing:

Crown Informatics send NHS Number, Date of Birth, Full postcode and FFFAP ID ( a study ID for the Falls and Fragility Fracture Audit Programme) to the HSCIC.

HSCIC DARS link data and provide Crown with
• List cleaning file (validated identifiers) with FFFAP ID
• HES non sensitive data for cohort with FFFAP ID
• HES non sensitive data for falls patients who are not in cohort but have a diagnosis of a fall or fracture
• ONS Date of death with FFFAP ID

Crown informatics receive data from HSCIC and combine with FFFAP data
Crown send validated identifiers and FFFAP ID to NWIS to receive Patient Episode Data for Wales ( PEDW)
Crown Informatics send Royal College of Surgeons (RCS)

• FFFAP ID and date of death, HES data, and PEDW data, data is pseudonymised apart from date of death.
RCS analyses data for audit
1. To estimate the annual number of hip-fractures in England at individual NHS trusts and hospitals so that levels of case-ascertainment within the NHFD can be derived.
2. To estimate whether there has been consistent reporting of outcomes to the NHFD by examining the agreement between the outcome measures derived from NHFD and HES data.
3. To calculate superspell figures for hospitals and NHS trusts from the last two available financial years and compare the average lengths of stays with superspell figures in the current year to assess whether there has been a reduction in acute and/or post-acute lengths of hospital stay.
4. Use HES to evaluate the benefit of long-term outcome measures such as 6-month / 1-year survival and readmission profiles by using ability the ability of HES to track patients and describe their patterns of care after an incident hip fracture.
5. To validate and refine casemix risk adjustment models for the audit
Crown make life status at 30 days available to trusts. For statistical purposes such as monitoring trends registered individuals at Trusts can access date of death for patients they submit to the audit derived from ONS mortality data. Run charts and tables are also provided using 30 day survival.

All individuals with access to record level data are employed by Crown Informatics or The Royal College of Surgeons.All outputs will be aggregated with small numbers supressed in line with the HES analysis guide. No record level data falling under this agreement will be shared with any third-party.

Project 11 — DARS-NIC-128537-M2P7G

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y ()

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Non Sensitive

When:2018.03 — 2018.05.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - List Cleaning Report

Objectives:

The Fracture Liaison Service Database (FLS-DB) is a clinically led, web-based quality improvement initiative commissioned by the Healthcare Quality Improvement Partnership (HQIP) and managed by the Royal College of Physicians (RCP). This is an ongoing initiative being delivered as part of a national clinical audit programme - currently commissioned until 31/03/2021.

There are an estimated half a million fragility fractures in the UK each year – more than three times the annual number of strokes. Fragility fractures are a major clinical event for patients, their families and carers. The direct health cost of these fractures are estimated at £4.3 billion every year. With an ageing population, absolute numbers of hip fractures are projected to increase by 65% in the next 20 years. National Institute for Health and Care Excellence (NICE)-approved medications significantly reduce the risk of the next fracture by 20–70% (depending upon fracture site). This is a substantial reduction in risk.

The overall aims of the FLS-DB are to improve the quality of care for patients who present to Fracture Liaison Services with a fragility fracture by measuring adherence to evidence based standards of care in the area of falls and fracture prevention. Fracture Liaison Services (FLSs) aim to reduce the risk of subsequent fractures by systematically identifying, treating and referring to appropriate services all eligible patients aged 50 and over who have suffered a fragility fracture. The FLS is a proven approach, recommended by the Department of Health, to targeting these high risk groups and improving secondary fracture prevention.

One of the specific FLS-DBs contract deliverables is to produce CCG level reports. Currently over 50 FLS in England and Wales submit data to the FLS-DB. However, over 100 trusts and local health boards (LHBs) and centres in England and Wales do not participate in submitting date to the FLS-DB. The vast majority of trusts and LHBs that do not provide data do not have a commissioned FLS. Additionally, the study's held data shows that there is often no relationship between a commissioned FLSs reported annual costs and their estimated fragility fracture caseloads. There have been no CCG level reports produced previously as a result of FLS-DBs.

The study will submit their cohort (men and women aged 50 years and over with a fragility fracture) for list cleaning to obtain the GP practice code. Patient data will then be linked to a CCG. This will allow creation of a CCG summary report which includes key performance indicators data at CCG level. This will highlight where CCGs have gaps in resourcing for existing FLSs and highlight clear areas for improvement.

Expected Benefits:

The overall aims of the FLS-DB is to improve the quality of care for patients who present at fracture liaison services with a fragility fracture by measuring adherence to evidence based standards of care in the area of falls and fracture prevention.

The estimated number of avoidable fractures every year is in the thousands. Any fragility fracture approximately doubles the risk of another fracture (ie a secondary fracture). If more patients were treated after a fragility fracture, many of these fractures could be avoided. All eligible patients receiving effective secondary fracture prevention would provide a real benefit to people in the UK, with almost 54,000 fractures prevented in the first 5 years.

Preventing fragility fractures is an important quality target area for reducing local variation and improving the population’s health. Fragility fractures are a major clinical event for patients, their families and carers. The direct health cost of these fractures are estimated at £4.3 billion every year. Preventing falls and fragility fractures and the resulting hospital have been shown to be both clinically and cost effective and will result in substantial cost savings for health and social care services.

A Fracture Liaison Service is a way for CCGs to reduce the number and cost of unplanned admissions and to make a significant reduction in morbidity and mortality for older people. Effective Fracture Liaison Services have been shown to reduce refracture rates.

Outputs:

Data provided by NHS Digital will be used to produce the FLS-DB CCG Summary Reports. Using the GP practice code allows for data to be grouped at CCG Level. The CCG summary Reports will contain CCG level data for 11 Key Performance indicators for Fracture Liaison Services. Previously this information has only be available at national and Fracture Liaison Services level. The summaries will be distributed to all CCGs in England. The summaries will be used to inform commissioning priorities by highlighting areas where Fracture Liaison Services are not commissioned sufficiently for the local population need.

The expected target date for these reports to be published is March 2018.

Processing:

In a previous experience of linking data from this source 98.37% records matched using only NHS number and Date of birth. Therefore, the only identifiable information Crown Informatics will send is NHS Number and Date of Birth.

Crown Informatics will send these identifiers and a study ID to NHS Digital. NHS Digital will link the data and provide Crown Informatics with a list cleaning file which contains NHS Number, Date of Birth and GP Practice code. Crown Informatics will receive this data from NHS Digital and link this with the non-identifiable patient data in the FLS-DB. Crown Informatics will convert GP practice to CCG code. Crown Informatics will send the study ID and CCG code to the University of Oxford and Royal College of Physicians. University of Oxford and Royal College of Physicians will analyse the data to summarise the FLS-DB's key performance indicators at CCG level.

There will be no requirement nor attempt to re-identify individuals from the data.

All individuals with access to record level data are substantive employees of Crown Informatics, Royal College of Physicians or University of Oxford. All outputs will be aggregated with small numbers suppressed in line with the HES analysis guide. No record level data falling under this agreement will be shared with any third-party.

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 ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Project 12 — DARS-NIC-56073-D6T0Q

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y ()

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Non Sensitive

When:2017.03 — 2017.05.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - List Cleaning Report

Objectives:

The Fracture Liaison Service Database (FLS-DB) is a clinically led, web-based quality improvement initiative commissioned by the Healthcare Quality Improvement Partnership (HQIP) and managed by the Royal College of Physicians (RCP). The database is designed as the platform for a national clinical audit which aims to establish whether services are providing assessment and treatment for osteoporosis after a fragility fracture by measuring against key standards from the National Osteoporosis Society (NOS) and the National Institute for Health and Care Excellence (NICE)

NHS number and additional secondary identifiers (name, DOB, postcode) are captured as part of the project dataset in order to track patients who have presented with a further fracture - either at the same service as their initial presentation or at another service nationwide - this is a key outcome measure of the project.

The RCP has agreed with the Confidentiality Advisory Group (CAG) that they will consider the adequacy of NHS number alone as a means of determining secondary presentations of the same patient - the RCP are therefore requesting list cleaning of a cohort so that they can judge whether secondary identifiers need to remain part of the audit dataset. Removing secondary identifiers from the dataset will reduce the number of identifiers being held under the auspices of the RCP’s CAG approval and consideration of this is a condition of the CAG approval.

Expected Benefits:

The overall aims of the project are to improve the quality of care for patients who present to fracture liaison services with a fragility fracture by measuring adherence to evidence based standards of care in the area of falls and fracture prevention. This is an ongoing initiative being delivered as part of a national clinical audit programme - currently commissioned until 2018.

Patients who have a fragility fracture are a high risk of sustaining further fractures which have major implications for morbidity and mortality. Fracture Liaison Services (FLS) are services which aim to identify patients who have has a fragility fracture and provide treatment for osteoporosis and further falls risk. The FLS-DB is a national clinical audit which measures performance against standards for FLS nationwide and through feedback of performance data (published reports and online reporting) and sharing of best practice, aims to improve the quality of these services.

As part of the RCP’s commitment to CAG, they wish to determine whether the current dataset (which contains NHS number, name, DOB and postcode) is required in its entirety to be able to track patients for future fractures.

If this list cleaning allows the RCP to determine that secondary identifiers are superfluous, then they will be able to reduce the exposure of sensitive data collected by the project.

Outputs:

Following this analysis a summary of aggregated data findings (with small numbers suppressed in line with the HES Analysis Guide) will be sent to the project team at RCP who will consider the results in order to determine:
1. If all secondary identifiers were removed from the dataset, what proportion of records could the team expect to be able to identify re-fractures for?
2. Is the rate of return of point 1 sufficient in order to be able to achieve the clinical and scientific objectives of the project (specifically to be able to use re-fracture as an outcome measure for the project).

The decision will be taken by a multidisciplinary advisory group including clinicians, methodologists and two patient and carer representatives. The different organisations involved in the composition of this group is as follows; Royal College of General Practitioners, AGILE and Chartered Society of Physiotherapy, British Geriatrics Society, National Osteoporosis Society, British Society for Rheumatology, Society for Endocrinology, University of Bristol, British Orthopaedic Association, Royal College of Nursing, University of Oxford, National Osteoporosis Society, NHS Vale of York CCG.

Patient/ user involvement are integral to the project and are delivered in a number of ways:

1. Third sector

The National Osteoporosis Society (NOS) is the only charity and advocacy body for patients with osteoporosis in the UK and has recently produced UK criteria and standards for an effective FLS. There are two representatives of the NOS on the FLS-DB project advisory group. The advisory group has been and will be involved in all stages of the project and providing recommendations over all aspects of the audit. The NOS is also leading on a multiagency FLS implementation group that includes NHSE and PHE as well as this FLS-DB advisory group. The NOS is also leading a project to support the implementation of new FLSs across the UK; this is another important opportunity to both pilot this project's audit tools as well as inform dissemination and uptake of the audit. The NOS will provide advice on analyses for the report and its dissemination to maximise impact.

2. FLS champions

Through the NOS, the RCP share access to existing FLS through the champions group. Members of the group include healthcare professionals that share a specialist interest in FLS. It is not a requirement to have an FLS to become an FLS Champion: some members are actively engaged in FLS, while others may join the network to gain a greater understanding and insight into FLS.

This group meets three times a year and represents an important opportunity to test and develop the audit tools and research questions developed through the FLS-DB advisory group.

3. Patients/ carers

The RCP have two patients as members of our FLS-DB advisory group. One representative is a carer of an elderly relative who has sustained both hip and non-hip fragility fractures and the other has experience of caring for her mother (who was in a care home) and husband (who was in hospital) who suffered from falls. Therefore, both have direct experiences of the needs of patients at risk of fragility fractures.

Once the decision is taken, then notification of the findings will be communicated to the Confidentiality Advisory Group as part of the annual review. If the decision is taken to remove the secondary identifiers from the dataset, then the following activities will take place:
1. List cleaning files will be destroyed using proprietary file shredding software
2. Current dataset items will be converted to non-identifiable items (DOB to age; Postcode to Lower Super Output Area)
3. Identifiable data items (other than NHS number) will be destroyed using proprietary file shredding software
4. A new dataset will be deployed for prospective data collection.

Processing:

The full cohort (size 18,000) will be submitted to NHS Digital containing NHS number, DOB, Surname, Forename, Gender and Postcode. The returned cleaned file will contain a study ID, with cleaned, updated data and match rank. These data will be used to inform decision making about the retention of secondary identifiers in the dataset.

The data files from list cleaning will be analysed by Crown Informatics to determine:
(a) What proportion of records were able to be matched on NHS number alone
(b) What proportion of records were unable to be matched on NHS number alone
(c) What were the characteristics of records that were unable to be matched on NHS number alone
(d) Were there any geographic patterns in the records that failed to be matched
(e) What was the proportion of match ranks of records that failed to be matched on NHS number alone.

Identifiable data will only be processed by Crown Informatics Ltd. The RCP will only have access to aggregated data. Patient names will only be used to verify NHS number and will then be destroyed. In addition, all identifiable data supplied to Crown Informatics Ltd will only be used for the purposes of determining the feasibility of removing secondary identifiers from the audit dataset and will be destroyed at the end of this agreement.

The identifiers supplied to NHS Digital are from hospital submission so are available to them also. The data received back from list cleaning will not need to be passed back to hospitals.

The data returned from NHS Digital will not be linked to any other data sets (e.g. Fracture Liaison Service Database).

Project 13 — DARS-NIC-165012-9JHGZ

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y, N ()

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Non Sensitive, and Sensitive

When:2016.04 — 2016.11.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cohort Event Notification Report
  2. MRIS - Cause of Death Report
  3. MRIS - Flagging Current Status Report
  4. MRIS - Scottish NHS / Registration

Objectives:

Linkage of SSNAP patient records with ONS death data, to determine patient outcomes
(such as survival at 30 days, 6 months and 1 year post stroke), so that the quality of care
delivered can be compared with the outcome for patients and linkage with HES data to
identify readmissions and further strokes (again so that the quality of care can be
compared with the outcome for patients) as well as the case ascertainment of audit
participants (the proportion of their coded stroke patients which are recorded in the
audit), which is important for contextualising the outcomes. Teams submitting data to
SSNAP will be updated with death data via the same secure system they enter the
patient identifiable audit data into. Teams are required to carry out a six month follow-up
assessment of patients and accessing the death data is important so that teams can
know which patients to contact for the appointment.
The data will also be used for producing outcome statistics at various levels including at
national level, CCG level and hospital level where appropriate. Any data reported on is
carefully considered in terms of whether it could be potentially identifiable and advice is
given on how the outputs should be interpreted.

Project 14 — DARS-NIC-312474-H5Q0T

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y ()

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Sensitive

When:2016.04 — 2016.08.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - List Cleaning Report

Objectives:

AUDIT
The National Hip Fracture Database (NHFD) is a clinically led, web-based quality improvement
initiative commissioned by the Healthcare Quality Improvement Partnership (HQIP) and managed by the Royal College of Physicians (RCP).
All 182 eligible hospitals in England, Wales and Northern Ireland are now regularly submitting data to NHFD, the largest hip fracture database in the world, with:
• a third of a million cases recorded since its launch in 2007
• over 95% of all new hip fracture cases being documented
• 5,700 records being added every month.
In addition to the information collected by the audit, Hospital Episode Statistics (HES) data is linked to the audit data to provide a richer data set.
HES data is used in this audit to look at patient pathways for people who have experienced a hip fracture. The audit will look at HES episode data for patients and link them together into a ‘super-spell’, this is the whole period of hospitalisation for the patient regardless of which consultant they are under and crossing hospitals where a transfer has taken place.
To ensure The Royal College of Physicians (RCP) can account for all reasons for a sequence of episodes ending, they need to be able to identify when a patient has died, particularly when this occurs unexpectedly during a planned sequence of episodes.
The data will be used to refine case ascertainment algorithms for the audit.
The data will be used to validate and refine casemix risk adjustment models for the audit.

RESEARCH
To calculate the total length of stay in NHS hospitals after a hip fracture (the “super-spell”), which can be derived from HES, and relate variation in super-spell to the variations in clinical care measured in the NHFD, to determine whether or not patients return to independent living after a hip fracture, and relate this to their clinical care.
To relate clinical processes of care, in particular orthogeriatric input into care (using NHFD), to medium and long-term outcomes including readmission to hospital and 365-day mortality (using ONS and HES data linked to NHFD,)
To relate individual comorbidity, measured using HES, to processes of care and patient outcomes, and to adjust for comorbidity in analyses of the relationship between clinical care and outcomes.

Expected Benefits:

As part of the Falls and Fragility Fracture Audit Programme (FFFAP) within the Clinical Effectiveness and Evaluation Unit at the RCP, the NHFD has now developed into a comprehensive quality improvement initiative and combines several elements:
• description of facilities and practice in different units around the country
• audit of practice against the NICE quality standard for hip fracture (QS16)
• performance evaluation to support Monitor’s Best Practice Tariff (BPT)
• support for clinical governance in individual hospitals
• metrics to support patient safety monitoring
• identification of outlier hospitals in respect of patient outcome
• a framework to support local and national audit work
• an infrastructure for scientific and research work
• a resource of specialist information, expertise and networking.

The data requested in this application will support

• More accurate risk-adjustment when comparing hospital performance, where linkage to HES will allow better measurement and adjustment for patient comorbidity. This would enable clinicians to identify patients with the highest risk of poorer outcomes – leading to better care and better delivery of services (value for money)
• Measurement of the impact of hospital hip fracture care on long-term outcomes, where linkage to HES will allow measurement of long-term outcomes such as readmission to hospital and future hip fractures. This will generate important knowledge that will inform the allocation of resources for hip fracture care leading to better commissioning and value for money.
• Measurement of the rate of return to independent living vs. residential care following a hip fracture. This is a key outcome of care. Each of the NHFD and HES database individually have shortcomings that can be overcome by using linked data. This will be useful to clinicians and commissioners involved in design and funding of intermediate, rehabilitation and social care leading to better commissioning and value for money.
• More accurate estimation of case-ascertainment (i.e., number and % of hip fracture patients recorded in NHFD). Targeted action could be taken to inform hospitals with incomplete case-ascertainment this will lead to better future audit and hence more robust benefits derived from it.

Outputs:

AUDIT
The results and methods used to derive case-ascertainment and HES super-spells will be published by the RCP in the NHFD annual report in September 2015 & September 2016. The results of the other analyses will be published in other NHFD supplementary reports and /or peer-reviewed articles.
RCP publish CCG level outcomes for the Best Practice Tariff and to support the NHS Outcomes Framework and CCG Outcome Indicators Set.
RCP publish provider level outcomes for the Best Practice Tariff.
For statistical purposes, such as monitoring trends, registered individuals at Trusts can access date of death for patients they submit to the audit, derived from ONS mortality data. Run charts and tables are also provided using 30 day survival.
Whilst the patient information leaflet states “We sometimes get requests from hospitals, universities and other organisations who want to carry out research using the data that we collect. We always ensure that researchers that we agree to share data with have approval from the National Research Ethics Service and we will never release information that could be used to identify you as an individual.” No record level data falling under this agreement will be shared to any third-party without prior HSCIC approval; such requests will be subject to separate consideration by DAAG. If approved only anonymised data would be shared with credible third parties in line with the customers S251.

RESEARCH
Research presentations and peer-reviewed articles in journals (such as ‘Medical Care’, ‘Anesthesia’, ‘Bone and Joint Journal’) are the required outputs of the NIHR Fellowship (ref PDF-2013-06-078) over the period 2014-2016.

All outputs will comply with the HES analysis guide, ONS disclosure control guidance for birth and death statistics , and the NHS anonymisation standard.

Processing:

Crown Informatics send NHS Number, Date of Birth, Full postcode, Name, and FFFAP ID ( a study ID for the Falls and Fragility Fracture Audit Programme) to the HSCIC.
HSCIC DARS link data and provide Crown with
• List cleaning file (validated identifiers) with FFFAP ID
• HES non sensitive data for cohort with FFFAP ID
• HES non sensitive data for falls patients who are not in cohort but have a diagnosis of a fall or fracture
• ONS Date of death with FFFAP ID
Crown informatics receive data from HSCIC and combine with FFFAP data
Crown send validated identifiers and FFFAP ID to NWIS to receive Patient Episode Data for Wales ( PEDW)

Crown Informatics send Royal College of Surgeons (RCS)
• FFFAP ID and date of death, HES data, and PEDW data, data is pseudonymised apart from date of death.
RCS analyses data for research and audit
Crown make death data available to trusts. For statistical purposes such as monitoring trends registered individuals at Trusts can access date of death for patients they submit to the audit derived from ONS mortality data. Run charts and tables are also provided using 30 day survival.
AUDIT
1. To estimate the annual number of hip-fractures in England at individual NHS trusts and hospitals so that levels of case-ascertainment within the NHFD can be derived.
2. To estimate whether there has been consistent reporting of outcomes to the NHFD by examining the agreement between the outcome measures derived from NHFD and HES data.
3. To calculate superspell figures for hospitals and NHS trusts from the last two available financial years and compare the average lengths of stays with superspell figures in the current year to assess whether there has been a reduction in acute and/or post-acute lengths of hospital stay.
4. Use HES to evaluate the benefit of long-term outcome measures such as 6-month / 1-year survival and readmission profiles by using ability the ability of HES to track patients and describe their patterns of care after an incident hip fracture.
5. To validate and refine casemix risk adjustment models for the audit

RESEARCH
Multivariable logistic regression models will be used to look at the relationship between processes of care (measured using NHFD) and various patient outcomes (measured using NHFD, HES and ONS), adjusting for patient characteristics (measured using NHFD and HES) that potentially affect both the care given and the risk of mortality, such as age, sex and pre-fracture mobility. Adjustment would also be made for hospital and time trends, which are also both potential confounding factors.
Multilevel logistic and cox regression may also be used to estimate the effects of individual care and organisational factors on 30-day mortality and survival, respectively. Methods for handling missing data, such as multiple imputation, will be used if suitable. In addition, the potential for using structural models to assess direct and indirect effects of processes of care on outcomes will be explored.
Using linked HES and NHFD extracts would overcome the limitations of each respectively: NHFD has incomplete follow-up, so it is not known what happens to patients that are discharged to PCT-run rehabilitation units; HES has too little detail in the coding of discharge destination, with the category “usual residence” covering a range of living arrangements. Using the linked data, it would be possible to identify a cohort of patients admitted from their own home who were living independently (from NHFD), who were discharged back to their usual residence at the end of the super-spell (from HES).