National Respiratory Audit Programme (NRAP): Outcomes of patients included in the adult asthma clinical audit

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

Objective for processing

[1 paragraph unchanged] The aim of this Data Sharing Agreement is to link data collected in the Adult Asthma Audit to hospital readmissions Data and mortality Data, data and 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 adult asthma audit are to: [31 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 16,132 admissions of adult asthma exacerbations in adult 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 16,701 admissions of adult asthma exacerbations in adult hospital services. [11 paragraphs unchanged]

Benefits reported

The first national audit report was published in December 2019, and reports on the key findings from data collected on 10,242 admissions for asthma attacks in adult hospital services for people aged 16 and above. ADULT ASTHMA The second national audit report was published in January 2021, and also reports on the key findings from data collected on 19,360 admissions for asthma attacks in adult hospital services for people aged 16 and above. 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. In January 2023, Drawing Breath, state of the nation combined clinical audit report was published, reporting on the key findings from data collected on 16,132 admissions of adult asthma exacerbations in adult hospital services. 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. 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 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. [1 paragraph unchanged] 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. changes necessary. The data presented within the latest last clinical outcomes report (2023) have been found to be extremely useful in providing a pre-COVID state [27 words unchanged] 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 (October 2025) will show how outcomes for people with asthma and COPD were affected [29 words unchanged] so that everyone with asthma and COPD gets the care they need. [4 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/ [3 paragraphs unchanged]

Unchanged: Processing activities, Expected measurable benefits.

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

Datasets: + Civil Registrations of Death · − HES-ID to MPS-ID HES Admitted Patient Care; − HES:Civil Registration (Deaths) bridge

Objective for processing

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. 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 Adult Asthma Patients. The adult asthma audit reports on care processes provided in the acute hospital setting in England and Wales. Aim The aim of this Data Sharing Agreement is to link data collected in the Adult 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 adult asthma audit are to: 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. • Identify variability and deficiencies in the care received by adults admitted to hospital with asthma attacks Legal Basis Justification: • Support improvement by providing timely and relevant data/ feedback to clinicians and local hospital teams 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. • Improve the basic standards of care for people admitted to hospital with asthma attacks 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. • Support improvement of mortality and readmissions rates for people with asthma in England and Wales 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. The following NHS England Data will be accessed: How data requested will achieve the aim identified • 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 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: • Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital • 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). The level of the Data will be pseudonymised. • Cause of mortality within 30 days of index arrival and 90 days of index arrival The Data will be minimised as follows: • 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). • Limited to a study cohort of adult asthma patients identified within the audit • Cause of readmission within 30 days of index discharge and 90 days of index discharge 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. • All diagnosis codes for the audited patients to carry out analysis on readmissions and mortality in relation to comorbidities. 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-727343-L3N2H. All NHS England Data for Welsh health service users is covered under DARS-NIC-727343-L3N2H, however the Data is disseminated under DARS-NIC-357479-S6C7T. 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. The lawful basis for processing personal data under the UK GDPR is: Background Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. The adult asthma audit workstream is one of five workstreams under the National Asthma and COPD Audit Programme (NACAP): HQIP’s lawful basis for processing special category data under the UK GDPR is: • COPD 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. • Adult asthma audit NHSE’s lawful basis for processing special category data under the UK GDPR is: • Children and young people asthma audit 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. • Pulmonary rehabilitation audit 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. • Wales Primary care audit 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 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 outputs into reports and interpret the findings. 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. 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: 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: [1 paragraph unchanged] • Charities (ie British Lung Foundation, British Thoracic Society, Asthma UK + Lung UK) • Other stakeholder organisations/professional organisations/ professional bodies (e.g (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time) • Patient representatives who have with lived experience of 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. 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. Other funders/commissioners involved and the nature of their role Patients are represented at four levels of the NRAP governance structure, including: The Healthcare Quality Improvement Partnership are the NACAP commissioner, whilst NHS England, the Welsh Government and Scottish Government are the NACAP funders. • 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. The role of HQIP as the commissioner in this request is as follows: • COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation. • They mandate the need for NACAP to produce outcomes reports across the programme. • Asthma Advisory Group – one adult with asthma or a carer of an adult with asthma. • 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. • Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers. 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).

Processing activities

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). 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. Flow of data out of NHS Digital 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. 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. Imperial College London will produce small numbers unsuppressed Data summarising relevant readmissions, comorbidities and mortality Data, and securely transfer this to the Royal College of Physicians (RCP). 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. The Data will be stored on servers at Imperial College London and RCP. Once Imperial College have received data from NHS Digital, using an adult asthma audit ID, the College will link: 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. -HES data for the cohort with an adult asthma audit ID Remote processing will only be through a secure electronic network and organisational controls prohibit personnel from downloading or copying data to local devices. -Mortality data for the cohort with an adult asthma audit ID Remote processing will be subject to the following being in place: Imperial College London will analyse the data for audit purposes as directed by HQIP: • Multifactor authentication (MFA); • 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. • Access controls granting users the minimum level of access required; • To add to the richness of the original dataset, by analysing data on co-morbidities. • Secure connections (e.g., VPNs or secure protocols) to protect data during remote access; 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). • Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls. 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. All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)). 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 not leave England/Wales at any time. Access is restricted to employees of Imperial College London and RCP. How the data is processed at each stage All personnel accessing the Data have been appropriately trained in data protection and confidentiality. 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/ The Data will be linked at person record level with the existing clinical audit dataset obtained from Crown Informatics. • 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). 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. Data flow stage 2: NHSD link data and provide HES APC & Civil Registration (deaths) data for audit cohort The following analyses will be undertaken by Imperial College London: • 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: [6 paragraphs unchanged] 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 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 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.

Expected output

Outputs as a result of the data processing The expected outputs of the processing will be: 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: • A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care • British Thoracic Society (BTS) Winter Meeting • 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 • Primary Care Respiratory Society UK (PCRSUK) Annual Conference 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. • Royal College of Paediatrics and Child Health (RCPCH) Conference The outputs will be communicated to relevant recipients through the following dissemination channels: • European Respiratory Society Congress • National outcomes report available via these websites: Level of data contained in outputs o RCP: www.rcp.ac.uk/nrap National adult 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 adult asthma audit 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). 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. • Social media Dissemination and communication approach • Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members The following methods of dissemination will be used for the national adult asthma outcomes report: • Conferences and events where NRAP has a presence (e.g. BTS Meetings) • The report will be made available on the following websites: The target dates for production and dissemination of the outputs are October 2025 . 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).

Expected measurable benefits

The adult asthma audit collects information on the processes of care provided [58 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 will is expected to generate important knowledge that can inform the allocation of resources for asthma [18 words unchanged] particularly important given that respiratory disease, including asthma, features within the NHS Long-term Long Term Plan, which is 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 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. The use of the Data could: For example, the 2017 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)* 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. • advance understanding of regional and national trends in health and social care needs. - 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. • inform planning health services and programmes, for example to improve equity of access, experience and outcomes. *The Charlson comorbidity index predicts the 10-year mortality for a patient who may have a range of comorbid conditions • inform decisions on how to effectively allocate and evaluate funding according to health needs. The NACAP aims to use outcomes data data to report on outcomes of adult asthma patients in a similar way. • 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. 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. • support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work). How dissemination is in the public interest 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. 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 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 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). 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 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)). 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). 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

Benefits reported

Yielded Benefits is not a requirement for new applications. The first national audit report was published in December 2019, and reports on the key findings from data collected on 10,242 admissions for asthma attacks in adult hospital services for people aged 16 and above. The second national audit report was published in January 2021, and also reports on the key findings from data collected on 19,360 admissions for asthma attacks in adult hospital services for people aged 16 and above. In January 2023, Drawing Breath, state of the nation combined clinical audit report was published, reporting on the key findings from data collected on 16,132 admissions of adult asthma exacerbations in adult hospital services. 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. 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. Adult asthma: 13.7% were readmitted within 30 days of discharge from hospital, 26.4% within 90 days. Adult asthma: 0.4% died within 30 days of admission to hospital, 0.8% 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.