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

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

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

• identify variability and deficiencies in the care received by children and young people admitted to hospital with asthma attacks

• support improvement by providing timely and relevant data/feedback to paediatricians and local hospital teams

• improve the basic standards of care for children and young people admitted to hospital with asthma attacks.

The following NHS England Data will be accessed:

• Civil Registration (Deaths) – necessary to analyse rates and causes of mortality within 30 and 90 days of patient arrival at hospital

The level of the Data will be pseudonymised.

The data will be minimised as follows:

• Limited to a study cohort of CYP asthma patients identified within the audit

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

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

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

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.

HQIP’s lawful basis for processing special category data under the UK GDPR is:

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

DHCW’s lawful basis for processing special category data under the UK GDPR is:

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

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

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

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

• NHS professionals (i.e. consultants, respiratory nurses)

• Charities (i.e. British Thoracic Society, Asthma + Lung UK, and Royal College of Paediatrics and Child Health)

• Other stakeholder organisations/ professional bodies (e.g. National Clinical Directors, and improvement bodies such as Getting It Right First Time)

• Patient representatives with lived experience of asthma

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

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

• NRAP Board – one adult with COPD, one adult with asthma, one/two children and young people with asthma and one carer of a child/young person with asthma.

• COPD Advisory Group – one adult with COPD and another person with COPD with experience of pulmonary rehabilitation.

• Asthma Advisory Group – two children and young people with asthma, and one carer of a child/young person with asthma.

• Patient Panel – 15 adults with asthma, ten children and young people with asthma and two/three carers.

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

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

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

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

The respective copies of the data will be stored on servers at Imperial College London and RCP.

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

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

Remote processing will be subject to the following being in place:

• Multifactor authentication (MFA);

• Access controls granting users the minimum level of access required;

• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;

• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.

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

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

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

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

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

The following analyses will be undertaken by Imperial College London:

• The proportion of patients who died within 30 days of index admission and 90 days of index admission

• The reasons for cause of death within the 30 days of index admission and 90 days of index admission

• Whether patients with comorbidities were more likely to die within 30/90 days of index admission

• Additional sub-analyses on whether the provision of elements of care during the index admissions had an effect on mortality at 30 and/or 90 days.

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

The expected outputs of the processing will be:

• A national outcomes report which will contain national recommendations for providers, commissioners/health boards/Sustainability Transformation Partnerships (STPs), as well as primary care. 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.

• 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

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.

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

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

• National outcomes report available via these websites:

o RCP: www.rcp.ac.uk/nrap

o NRAP (hosted by Crown Informatics): www.NRAP.org.uk

o HQIP’s website: https://www.hqip.org.uk/a-z-of-nca/national-asthma-and-copd-audit-programme-nacap/#.X2TNCXdFz4g – plus newsletters and bulletins

• Notification to relevant web tool users from participating hospitals (the number that participated in each specific cohort) across the relevant devolved nation. These sites will be notified in order to inform them of availability of hospital-level reports on the audit web tool (this will occur via the same launch email to hospitals regarding the national report).

• Social media

• Briefing documents and launch communications provided to stakeholder organisations such as Asthma + Lung UK; and NRAP governance group members

• Conferences and events where NRAP has a presence (e.g. BTS Meetings)

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

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

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

The use of the Data could:

• help the system to better understand the health and care needs of populations.

• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

• advance understanding of regional and national trends in health and social care needs.

• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.

• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

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

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

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

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

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.

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.rcp.ac.uk/improving-care/resources/clinical-outcomes-summary-report-201820/