National Respiratory Audit Programme (NRAP): Outcomes of patients included in the children and young people asthma clinical audit

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Objective for processing

[1 paragraph unchanged] The aim of this Data Sharing Agreement is to link data collected in the CYP Asthma Audit to hospital readmissions Data and mortality Data, data and to use the linked data to illustrate whether the healthcare provided to patients admitted to hospital with [8 words unchanged] bad outcomes. The overarching aims of the CYP asthma audit are to: [20 paragraphs unchanged] • NHS professionals (ie (i.e. consultants, respiratory nurses) • Charities (ie (i.e. British Thoracic Society, Asthma + Lung UK, and Royal College of Paediatrics and Child Health) [9 paragraphs unchanged]

Expected output

[1 paragraph unchanged] • A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care care. The outcomes report for the cohort period of 01 April 2021 to 31 March 2023 is due for publication in October 2025. The report will provide data on 30- and 90-day mortality and readmissions for patients in England and Wales for this period. [1 paragraph unchanged] In January 2023, Drawing Breath (01 April 21 to 31 March 22), state of the nation combined clinical audit report was published, reporting on the key findings from data collected on 14,168 admissions of children and young people asthma exacerbations in paediatric hospital services. In June 2024, Breathing Well (01 April 22 to 31 March 23), state of the nation combined clinical audit report was published, reporting on key findings from data collected on 11,209 admissions of children and young people asthma exacerbations in paediatric hospital services. [11 paragraphs unchanged]

Benefits reported

The first Children and Young People National Clinical Outcomes report was published in March 2023 and has provided key recommendations which highlight particular areas requiring attention. It is intended to be used by service providers, commissioners and clinical teams when reviewing and recognising areas of success or areas requiring improvement to help influence change. It is important to obtain further outcomes data to determine whether this change has been implemented. In 2023, patient outcomes were published for the cohorts of 2018 to 2020. This was used to inform recommendations around structural resourcing of services, post the COVID-19 pandemic. The production and dissemination of national and site level reports detailing patient outcomes (i.e. mortality and readmissions) allow participating sites to understand the extent to which their data (which is presented in the individual site level results) compares at a country and national level and identify areas of success or areas that require improvement. This subsequently informs local healthcare improvement initiatives, shared learning, local change and service development. The National Outcomes report has provided key recommendations which highlight particular areas requiring attention. These support national policy and regulatory action and patient empowerment to improve asthma care. Depending on findings, local action to improve patient outcomes has been identified for instance, encouraging hospitals to take action to reduce readmission and mortality rates and ultimately improve patient healthcare and outcomes. Improving patient outcomes in this population has the potential to reduce the level of social care required for these patients, alongside other healthcare services. The outcomes reporting outputs are produced at national level (presenting national and country level results) and individual site level. This has enabled participating services to benchmark their performance against national and country level averages and supported the identification of areas for success or for improvement. This has in turn supported national and local healthcare improvement initiatives and service development. [7 paragraphs unchanged] Previous recommendations have advanced understanding of regional and national trends in health [20 words unchanged] presented based on regions and nations. This report can be found here: https://www.rcplondon.ac.uk/file/44391/download https://www.rcp.ac.uk/improving-care/resources/clinical-outcomes-summary-report-201820/ Previous recommendations have identified areas of good practice to learn from, or areas of poorer practice which need to be addressed. In 2014 the Royal College of Physicians published the National Review of Asthma Deaths (NRAD): why asthma still kills. The data returned via the March 2023 published clinical outcomes report continues to support the recommendations as highlighted within this report: organisation of the NHS service; medical and professional care; prescribing and medicines use; and patient factors and perception of risk. Previous recommendations have also supported knowledge creation or exploratory research. Lessons learnt from obtaining these Data have been used to inform inclusion criteria, outcomes, and case ascertainment methodology changes to strengthen NRAP’s future outcomes reporting.

Unchanged: Processing activities, Expected measurable benefits.

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Datasets: + Civil Registrations of Death · − HES:Civil Registration (Deaths) bridge

Objective for processing

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. The Healthcare Quality Improvement Partnership (HQIP) and NHS England 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. 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. 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: 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. • identify variability and deficiencies in the care received by children and young people admitted to hospital with asthma attacks 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: • support improvement by providing timely and relevant data/feedback to paediatricians and local hospital teams • 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). • improve the basic standards of care for children and young people admitted to hospital with asthma attacks. • Cause of mortality within 30 days of index arrival and 90 days of index arrival The following NHS England Data will be accessed: • 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). • Hospital Episode Statistics Admitted Patient Care – necessary to analyse rates and causes of readmissions with 30 and 90 days of patient discharge from hospital; length of stay; and associations between likelihood of mortality and readmission with comorbidities. • Cause Civil Registration (Deaths) – necessary to analyse rates and causes of readmission mortality within 30 days of index discharge and 90 days of index discharge patient arrival at hospital • All diagnosis codes for the audited patients to carry out analysis on readmissions and mortality in relation to comorbidities. The level of the Data will be pseudonymised. 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 data will be minimised as follows: 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. • Limited to a study cohort of CYP asthma patients identified within the audit The children and young people asthma audit workstream is one of five workstreams under the National Asthma and COPD Audit Programme (NACAP): HQIP has commissioned the Royal College of Physicians (RCP) to undertake the work. NHSE are the funders of the work for the English aspect of the audit. HQIP and NHSE are the controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above. • COPD audit Digital Health and Care Wales (DHCW) are the funders and joint controllers of the work for the Welsh aspect of the audit. This is reflected under DARS-NIC-727954-G5X8B. All NHS England Data for Welsh health service users is covered under DARS-NIC-727954-G5X8B, however the Data is disseminated under DARS-NIC-379653-W3G5Q. • Adult asthma audit The lawful basis for processing personal data under the UK GDPR is: • Children and young people asthma audit 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. • Pulmonary rehabilitation audit HQIP’s lawful basis for processing special category data under the UK GDPR is: • Wales primary care audit 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. 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. NHSE’s lawful basis for processing special category data under the UK GDPR is: Neither the primary care audit nor the pulmonary rehabilitation audit will be requesting NHS Digital data. 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. Data requests are also sent to the following bodies in order to report on outcomes for the audit cohort: 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. • 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) 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 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. • National records for Scotland and Information Services Division (ISD) Scotland data 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: (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). • NHS professionals (ie consultants, respiratory nurses) 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. • Charities (ie British Thoracic Society, Asthma + Lung UK, and Royal College of Paediatrics and Child Health) 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. • Other stakeholder organisations/ professional bodies (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time) 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. • Patient representatives with lived experience of asthma 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. 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. 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. Patients are represented at four levels of the NRAP governance structure, including: The data subjects are made up of the cohorts outlined below. • 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. 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. [1 paragraph unchanged] • Asthma Advisory Group – one adult with asthma, two children and young people with asthma, and one carer of a child/young person with asthma. [1 paragraph unchanged] The Asthma Advisory Group and the Board included representation from two children/young [12 words unchanged] 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). 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.

Processing activities

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. Crown Informatics will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Date of Birth, Postcode, and a unique person ID) for the cohort to be linked with NHS England Data. 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. NHS England will provide the relevant records from the HES Admitted Patient Care and Civil Registrations (Deaths) datasets 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. 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. 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 following steps will be processed for each cohort, once provided to NHS Digital. The Data will be stored on servers at Imperial College London and RCP. 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. 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. 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. Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices. Once Imperial College have received pseudonymised data from NHS Digital, using a children and young people asthma audit ID, they will link: Remote processing will be subject to the following being in place: • HES data for the cohort with a children and young people asthma audit ID • Multifactor authentication (MFA); • Mortality data for the cohort with a children and young people asthma audit ID • Access controls granting users the minimum level of access required; Imperial College London will analyse the data for audit purposes as directed by HQIP/NHSE (the data controllers): • Secure connections (e.g., VPNs or secure protocols) to protect data during remote access; • 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. • Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls. • To add to the richness of the original dataset, by analysing data on co-morbidities. All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)). 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). The Data will not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP. 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. All personnel accessing the Data have been appropriately trained in data protection and confidentiality. 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 Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics. The following analyses will be undertaken by Imperial College London on behalf of the RCP: 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: [5 paragraphs unchanged] • Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on of 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 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. 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).

Expected output

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. The expected outputs of the processing will be: 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. • A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care 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: • 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 - British Thoracic Society (BTS) Winter Meeting 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. - Primary Care Respiratory Society UK (PCRSUK) Annual Conference The outputs will be communicated to relevant recipients through the following dissemination channels: - Royal College of Paediatrics and Child Health (RCPCH) Conference • National outcomes report available via these websites: - European Respiratory Society Congress o RCP: www.rcp.ac.uk/nrap National children and young people asthma audit outcomes report o NRAP (hosted by Crown Informatics): www.NRAP.org.uk The national outcomes report will provide national-level aggregated information. Small numbers will be suppressed, as per HES analysis guidelines. 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 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: [1 paragraph unchanged] • Hospitals will be encouraged to review their data in ongoing communications as relevant under the audit programme. • Social media Note: these reports do not get disseminated further, therefore this is the only method by which these hospital-level reports are launched. • Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members The first national and hospital-level reports due for publication under this application are expected to be published in spring 2022. • Conferences and events where NRAP has a presence (e.g. BTS Meetings) 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. The target dates for production and dissemination of the outputs are October 2025.

Expected measurable benefits

The children Children and young people Young People (CYP) asthma audit collects information on the processes of care provided to patients [93 words unchanged] 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). 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 may is expected to generate important knowledge that could can inform the allocation of resources for asthma care in hospitals, leading to [13 words unchanged] particularly important given that respiratory disease, including asthma, features within the NHS Long-term Long Term Plan, which is striving driving to improve care for major health conditions (NHS Long Term Plan, 2019). 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. In addition, by requesting data on the rate of patient co-morbidities (the presence of one or more additional conditions often co-occurring (that is, concomitant or concurrent) with a primary condition), the NACAP could allow for more accurate risk assessment. This information may enable clinicians to identify patients with higher risk of poorer outcomes based on what comorbidities they have. The use of the Data could: For example, the 2017/18 NACAP COPD outcomes report reported the following outcomes: • help the system to better understand the health and care needs of populations. • Patients with comorbidities were more likely to be readmitted within both 30 and 90 days of index discharge. • lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience. • Patients with a Charlson Comorbidity Index (CCI) Calculator of 7 or more were twice as likely to be readmitted within both 30 and 90 days of index discharge than a patient with no comorbidities • advance understanding of regional and national trends in health and social care needs. • Patients who were admitted to hospital for longer than 4 days (the median length of stay) were 20% more likely to be readmitted within both 30 and 90 days of index discharge. • inform planning health services and programmes, for example to improve equity of access, experience and outcomes. The NACAP aims to use outcomes data to report on outcomes of children and young people asthma patients in a similar way. • inform decisions on how to effectively allocate and evaluate funding according to health needs. The data requested may 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 may 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 may also allow hospitals to monitor trends in patient outcomes. • 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. 5.4 million people in the UK are currently receiving treatment for asthma: 4.3 million adults (1 in 12) and 1.1 million children (1 in 11) • support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work). The NHS spends around £1 billion a year treating and caring for people with asthma) (Asthma UK, 2020). 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 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 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. 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. 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. 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 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). 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 may 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/national-asthma-and-copd-audit-programme-nacap-copd-clinical-audit-201718. Hospital-level outcomes reports may 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 children and young people asthma audit is part of a wider programme of asthma and COPD audits which also includes a quality improvement workstream. The NACAP works closely with organisations such as Asthma UK and British Lung Foundation and Royal College of Paediatrics and Child Health (RCPCH) to disseminate messages and ensure audit data is represented (e.g. inclusion in the Taskforce for Lung Health). 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. 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 and British Lung Foundation 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 children and young people 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 annual outcomes report is expected for publication in winter 2021/2022. The forthcoming clinical report for children and young people will make recommendations to services to improve care. Once the data for children and young people asthma patients has been analysed and reviewed, the audit aims to use outcomes data provider recommendations to improve children and young people asthma patient outcomes in a similar way. 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.

Benefits reported

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. The first Children and Young People National Clinical Outcomes report was published in March 2023 and has provided key recommendations which highlight particular areas requiring attention. It is intended to be used by service providers, commissioners and clinical teams when reviewing and recognising areas of success or areas requiring improvement to help influence change. It is important to obtain further outcomes data to determine whether this change has been implemented. Previous recommendations have helped the system to better understand the health and care needs of populations as follows: The clinical outcomes report, published March 2023, is currently being used by service providers, commissioners and clinical teams in reviewing and recognising their areas of success or areas requiring improvement to help influence and affect the change. The data presented within the latest clinical outcomes report have been found to be extremely useful in providing a pre-COVID state of healthcare and a baseline on which services can be re-built. Currently, there is a joint responsibility for policy makers, commissioners and NHS services to ensure development of excellent care post-COVID, the published report is intended to support that. Respiratory services have been working differently since the pandemic, and the next set of data to be published will show how outcomes for people with asthma and COPD were affected coming out of COVID-19 (April 2021 onwards). This report highlights the need for all parts of the health service to prioritise respiratory care as they recover from the pandemic, so that everyone with asthma and COPD gets the care they need. Previous recommendations have lead to the identification of improvements required to health and care system design, to improve health and care outcomes as follows: Asthma and Lung UK stated that the data show that many people are being readmitted to hospital within 3 months of going home and that some are dying within 3 months of their exacerbation (see key findings below). This suggests that the healthcare community must look critically to see if there is more that can be done to make sure that anyone admitted to hospital for their asthma or COPD gets the best possible support afterwards to avoid future flare ups. Children and young people asthma: 9.5% were readmitted within 30 days of discharge from hospital, 19.2% within 90 days. Previous recommendations have advanced understanding of regional and national trends in health and social care needs. An interactive report was published for the clinical outcomes report allowing users to quickly view data presented based on regions and nations. This report can be found here: https://www.rcplondon.ac.uk/file/44391/download Previous recommendations have identified areas of good practice to learn from, or areas of poorer practice which need to be addressed. In 2014 the Royal College of Physicians published the National Review of Asthma Deaths (NRAD): why asthma still kills. The data returned via the March 2023 published clinical outcomes report continues to support the recommendations as highlighted within this report: organisation of the NHS service; medical and professional care; prescribing and medicines use; and patient factors and perception of risk. Previous recommendations have also supported knowledge creation or exploratory research. Lessons learnt from obtaining these Data have been used to inform inclusion criteria, outcomes, and case ascertainment methodology changes to strengthen NRAP’s future outcomes reporting.