National Chronic Obstructive Pulmonary Disease (COPD) Audit (Pulmonary Rehabilitation) - Linked Outcome Data

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

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

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

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

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).

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

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

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

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

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

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

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data). All individuals with access to record level data are substantive employees of RCP.

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

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

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

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

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

The outcomes to be assessed in these outputs are:

• Number of admissions (respiratory and non-respiratory causes)

• Time to first admission

• Length of stay and number of bed days

• Survival at 90/180 days post initial pulmonary rehabilitation assessment (using Y/N flags as this is the most critical time-point)

• Survival at 90/180 days post referral to pulmonary rehabilitation (using month and year of death)

• Survival at 90/180 days post completion or drop-out of pulmonary rehabilitation (using month and year of death)

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

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

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

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

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

At the RCP, there is considerable experience using national data in audit programmes, including previous national COPD audits, which have become a valuable source of data for commissioners, Departments of Health, patients, clinicians and managers. Generally, and on a continuous basis (as reports are published regularly for the audit programme as a whole) the audit programme aims to provide the following expected measurable benefits to health:

Improving standards of care:

o The audit programme aims to assess the provision and quality of COPD services compared against national standards and guidelines, to inform improvements in patient care and patient experience.

o Access to national comparative data allows clinicians, commissioners and patients to examine key aspects of the quality of care and the outcomes of that care, and to implement change accordingly.

Informing patient choice:

o Information can be used to assist patients in making decisions about how, when and where they get treated.

o By making assessments on quality of care provided and linking this to outcome data, some easy to understand information can be developed to inform and empower patients.

Effective commissioning:

o NHS commissioners will be able to understand which services are associated with good/poor outcomes, as well as where there are gaps in service provision, and allocate resources accordingly.

o The audit will also link clinical care with postcode to identify inequalities and areas of deprivation.

Provide new evidence:

o The audit programme will build on knowledge gained from previous national COPD audits and, by utilising patient identifiable data to follow the patient pathway, will provide a more comprehensive national body of evidence on COPD.

o Learning from the audit will be fed back to healthcare professionals to support the generation of demonstrable improvements in COPD services and the care which COPD patients receive.

Specifically, this data requested in this application will support:

Measurement of the impact of Pulmonary Rehabilitation on patient outcomes.

o HES linkage will allow the audit to gauge the extent to which use of Pulmonary Rehabilitation services impact upon hospital admission rates and length of stay (for admissions occurring within 6 months of commencement of Pulmonary Rehabilitation).

o ONS linkage will allow the audit to gauge the impact that use of Pulmonary Rehabilitation services have on patient mortality (for admissions occurring within 6 months of commencement of Pulmonary Rehabilitation).

o Ultimately, this will provide evidence of the extent to which that Pulmonary Rehabilitation services are having a long-term, sustained impact on patients.

o This important knowledge will inform the allocation of resources for Pulmonary Rehabilitation services, leading to better commissioning and value for money.

Facilitation of completeness and accuracy of data:

o Linked data will allow the audit to cross-check the accuracy of demographic details, in order to ensure that case-mix is appropriately accounted for.

Facilitation of local quality improvement:

o There is an evidence base that suggests a number of key elements should be invested in stimulating clinicians to change their behaviour. These principles apply at individual and at team level:

 Having access to the data

 Understanding the key messages from the data

 Understanding the impact of not changing

 Knowing what the standard should be

 Knowing how to make the change

o The national outcomes report will include all of these change elements. It is appreciated, however, that although some will find these data sufficient to take the quality improvement agenda forwards others will need considerably more incentive. A number of approaches will be taken, as outlined below:

1) Information will be provided specifically to commissioners of care and individual services (local reports) to highlight variation, deficiencies in care and also areas of good practice that deserve recognition.

2) The audit will work with partners (British Thoracic Society, British Lung Foundation, Royal College of General Practitioners, Primary Care Respiratory Society UK) who will support change by disseminating findings to respiratory contacts by condensing the findings into key messages with a connection to the impact of not improving services, collecting and disseminating best practice case studies, developing additional guidance (where appropriate) and the signposting to currently available guidance, producing and sharing top tips and information about how to make practical improvements.

3) Data will be presented to the DH directly in order to influence future commissioning guidelines and shared with the Care Quality Commission to inform its Quality Risk Profile. Consortium members from the audit steering group have an active dialogue and involvement in working groups in all these organisations. HQIP are represented on the steering group, and have direct links with the DH as well as CQC who also have representation on the steering group. It is important to note, that the data presented to these bodies will not be any different to that published in the supplementary report.

4) Findings will be presented in journal articles, as well as at local, national and international conferences and members of the team will make themselves available to present and discuss data at commissioning meetings on request.

Update February 2019:

A number of expected measurable benefits have now been met, these include:

1) Information has been provided specifically to commissioners of care and individual services (local reports) to highlight variation, deficiencies in care and also areas of good practice that deserve recognition.

2) The audit has worked with partners (British Thoracic Society, British Lung Foundation, Royal College of General Practitioners, Primary Care Respiratory Society UK) who have supported change by disseminating findings to respiratory contacts by condensing the findings into key messages with a connection to the impact of not improving services, collecting and disseminating best practice case studies, developing additional guidance (where appropriate) and the signposting to currently available guidance, producing and sharing top tips and information about how to make practical improvements.

3) Data has been presented to the DH directly in order to influence future commissioning guidelines and shared with the Care Quality Commission to inform its Quality Risk Profile. Consortium members from the audit steering group have an active dialogue and involvement in working groups in all these organisations. HQIP are represented on the steering group, and have direct links with the DH as well as CQC who also have representation on the steering group.

Achievements using the data already held:

- Production of national reports detailing patient outcomes (i.e. mortality and admissions to hospital) – please see: https://www.rcplondon.ac.uk/projects/outputs/pulmonary-rehabilitation-beyond-breathing-better.

This included a list of key recommendations to support pulmonary rehabilitation sites, hospitals and primary care practitioners to improve the care they provide to patients, namely:

- Healthcare staff should be aware of the association between completion of PR and better patient outcomes, and prioritise the offer of referral of eligible patients during consultations, support eligible patients to complete PR programmes wherever possible. This may require specific targeted interventions.

- PR programmes should consider how best to accommodate patients who interrupt programmes as a result of hospital admission, so that they might in due course complete programmes that they have enrolled on.

- Healthcare staff should work with patient support organisations and charities to make patients and the public aware of the beneficial health outcomes resulting from completion of PR, so as to encourage patients to seek referral from their clinical teams.

- Production of local reports (shared only with the relevant service), to allow them to understand the extent to which their data compared to the national average and, subsequently, to inform local change and service development.

- Further supportive tasks conducted based on these findings included:

- Workshops and events to support services to improve and change

- Creation of a good practice repository (in train) to support sharing of good practice

- Work on the web-tool to capture

- Presentation of abstracts at the European Respiratory Society, British Thoracic Society, Chartered Society of Physiotherapists, etc. to disseminate the findings of the audit as much as possible