National Audit of Cardiac Rehabilitation

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

Objective for processing

Established in 2005 and funded by the British Heart Foundation the National Audit of Cardiac Rehabilitation (NACR) is managed by a team based in the Department of Health Sciences at the University of York. The University of York requires data to enable the NACR National Audit of Cardiac Rehabilitation (NACR) to report accurately on cardiac rehab so that commissioners can make informed decisions about the performance of services they fund. The same Established in 2005, NACR is a national audit based at the University of York in the Department of Health Sciences, funded by the British Heart Foundation (BHF) and hosted by the University of York. It collects comprehensive audit data helps the NACR team used to report on performance against national clinical standards quality assure programmes, support improvement and patient outcomes at CCG and local clinical monitoring of cardiac rehabilitation programme level. services in terms of their uptake, quality and clinical outcomes. The audit data helps the NACR team to report on performance against national clinical standards and patient outcomes at Clinical Commissioning Groups (CCG) and local clinical cardiac rehabilitation programme level. NACR's remit is to support clinical cardiac rehabilitation teams in auditing their service, under the guidance of a National Steering Committee which includes clinical and patient representatives. The University of York are the sole Data Controller and Data Processor for the data under this agreement. The study team require inpatient data related to cardiac conditions which will be used to provide the denominator for the number of patients who should have received Cardiac Rehabilitation. HES APC data is requested yearly to obtain the latest finalised year of data in order to report to the BHF at the end of each year. The lawful basis for undertaking this research under the General Data Protection Regulation (GDPR) articles are: • Article 6 (1)(e): processing is necessary for the performance of a task carried out in the public interest. The processing of data is necessary for the National Audit of Cardiac Rehabilitation to ensure that the number of eligible patients with a heart event can be identified. • Article 9 (2)(j): processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. The data requested will achieve the aim identified above by helping to improve cardiac rehabilitation services and access to these services. [1 paragraph unchanged] • Monitor and support cardiovascular rehabilitation (CR) teams and commissioners in delivering high-quality and effective services, to evidence-based standards, for the benefit of all eligible patients. • Map the extent of provision and highlight inequalities and insufficiencies in delivery [12 words unchanged] Board and Cardiac Network levels for over 320 programmes in the UK. • Design and implement research to determine the effectiveness of routinely delivered CR services on patient agreed outcomes, cardiovascular disease risk profiles and health and social care utilisation. [1 paragraph unchanged] NICE •NICE clinical guidance and service specification development Clinical •Clinical practice standards from national associations NHS •NHS healthcare commissioning processes and decision making The •The public and cardiac patient groups about how their local services are performing. The NACR aims to generate data on cardiac rehabilitation to help inform [43 words unchanged] anonymised programme level. In 2016 NACR produced named local reports which included one patient outcome. outcomes. The 2017 report has continued to generate local and named reporting as well as at both Strategic Health Authority and Sustainability and Transformation Partnerships level. As the NACR carries out more multi-factor analysis the numbers of patients [14 words unchanged] five or more condition types are split and factored in (e.g. elective PCI, MI, percutaneous coronary intervention (PCI), myocardial infarction (MI), MI+PCI, CABG coronary artery bypass graft (CABG) and heart failure) plus gender, ethnicity and three age categories. This can [11 words unchanged] the eight patient outcomes the University report, (QoL, physical activity status, fitness, HADs, BMI, Hospital Anxiety and Depression Scale (HADS), Body Mass Index (BMI), waist circumference, BP, chol). blood pressure (BP), cholesterol). In order to enable these important analyses, data from previous years needs to be combined with the new data. [1 paragraph unchanged] 1. Group-based, 2. Home-based, 3. Web-base, 4. Home Visits (one to one), 5. Telephone supported options, 6. Other Modes (variable types by some programmes). 1. Group-based, There is robust trial evidence and NICE guidance for Group-based with emerging evidence for Home-based and slight evidence for web-based. As recent clinical trials and the NACR reports have shown the quality of delivery of these modes of CR may be sub-optimal and not meet clinical guidelines and minimum standards. There is no robust evidence for the other modes of delivery (4 to 6) but the study recognise that local hospital circumstances and resources may permit/require a lesser/different version of CR to be delivered temporarily. 2. Home-based 3. Web-based 4. Home Visits (one to one) 5. Telephone supported options 6. Other Modes (variable types by some programmes). There is robust trial evidence and NICE guidance for Group-based CR with emerging evidence for Home-based and slight evidence for web-based. As recent clinical trials and the NACR reports have shown the quality of delivery of these modes of CR may be sub-optimal and not meet clinical guidelines and minimum standards. There is no robust evidence for the other modes of delivery (4 to 6) but the study recognises that local hospital circumstances and resources may permit/require a lesser/different version of CR to be delivered temporarily. [1 paragraph unchanged]

Processing activities

NHS Digital will send pseudonymised, non-sensitive data to the University of York. The NACR team based at the University of York has substantial analytical skills and infrastructure with a proven record in managing the national audit. The team support over 1000 NACR users and are supported by the University of York analysts in cleaning and validating the data and carrying out basic and advanced statistical analyses using SPSS and Stata (software packages to enable statistical analysis of the data) which are licenced through the University of York. 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). The funders will not have any influence on the outcomes of the analysis. NHS Digital will send pseudonymised, non-sensitive Admitted Patient Care data to the University of York. Data is stored on a secure server at the University of York. The extract will be filtered to contain only episodes relating to specific cardiac conditions. The NACR team based at the University of York has substantial analytical skills and infrastructure with a proven record in managing the national audit. The team support over 1000 NACR users and are supported by the University of York analysts in cleaning and validating the data and carrying out basic and advanced statistical analyses using SPSS and Stata (software packages to enable statistical analysis of the data) which are licenced through the University of York. There will be no attempt to re identify individuals. Only staff funded by and employed by the NACR and situated in the University will access the data. This is the same as previous agreements and no PhD students or researchers who are not substantive employees of the University of York will have access to the data. Data is stored on a secure server at the University of York. Access to the folder and data is restricted to members of the NACR Team. The funder (BHF) will not have any influence on the outcomes of the analysis. [3 paragraphs unchanged] The NACR is not permitted to share data with any other party [37 words unchanged] party and NHS Digital with exact methods of how they process and analysize analyse the data for research replication. There will be no data linkage undertaken with NHS Digital data provided under that is not described in this agreement. No record level data will be shared with a any third party. parties. 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).

Expected output

The data will be reported at the organisational level in the 2018 National Audit of Cardiac Rehabilitation (NACR) Annual Report with Strategic Clinical Network (SCN), and local reporting of key performance indicators and aggregated patient outcomes - expected publication November 2018. There is only one section of the NACR report that uses HES Admitted Patient care data, which is the uptake section and in that it is only used to calculate the denominator. The time frame for publication is Nov/Dec each year and the target audience is clinical teams, commissioners and the public. In line with previously published work (Harrison 2017), the audit may also look to perform research on the eligible group provided by HES and the receiving group in the NACR, however, all reporting will be as aggregated data. The NACR report is used by the British Heart Foundation service engagement teams to support quality improvement. The data from NACR and its findings outlined in the NACR annual report are used to support the BHF. They also inform the national certification programme which is a joint initiative between the British Association for Cardiovascular Prevention and Rehabilitation (BACPR) and NACR. The data will be reported at the organisational level in the 2019 National Audit of Cardiac Rehabilitation (NACR) Annual Report with Strategic Clinical Network (SCN), and local reporting of key performance indicators and aggregated patient outcomes - expected publication November 2019. The previous finalised report was published in December 2018. In line with previously published work (Harrison 2017), the audit may also look to perform research on the eligible group provided by HES and the receiving group in the NACR, however, all reporting will be as aggregated data with small number suppression applied in line with the HES analysis guide only. [3 paragraphs unchanged]

Expected measurable benefits

NACR is a quality improvement registry that continues to monitor and improve the quality of service delivery which was shown to be of inferior quality by the a UK wide trail (the RAMIT study - West RR, et al Heart 2011;98:637-44). Rehabilitation After Myocardial Infarction Trial. The NACR report highlighted many of these shortfalls in 2015 at Strategic [14 words unchanged] individual programmes to see how they are performing against clinical minimum standards. This reporting approach will deliver the required detail and enable CCGs and hospitals to see how they are performing against clinical minimum standards. The NACR, in collaboration with the BACPR, is running a national certification programme which aims to ensure that all CR programmes are working to agreed clinical minimum standards supplied at a programme level, to help make judgements about their level of achievement. The overall aim is not to close CR programmes but is instead to drive up quality of delivery and optimise outcomes for patients. The NACR and the University of York expect to see these improvements within 12 months of the analysis and reports. NACR are working with the British Association for Cardiac Rehabilitation (BACPR) with a shared aim of having at least 50% of programmes working to published minimum standards by June 2019. This reporting approach will deliver the required detail and enable CCGs and hospitals to see how they are performing against clinical minimum standards. The NACR, in collaboration with the British Association for Cardiovascular Prevention and Rehabilitation (BACPR) is running a national certification programme which aims to ensure that all CR programmes are working to agreed clinical minimum standards supplied at a programme level, to help make judgements about their level of achievement. The overall aim is not to close CR programmes but is instead to drive up quality of service delivery and optimise outcomes for patients. The NACR and the University of York expect to see these improvements within 12 months of the analysis and reports. NACR are working with the British Association for Cardiac Rehabilitation (BACPR) with a shared aim of having at least 55% of programmes working to published minimum standards by the end of 2019.

Benefits reported

Working with national associations such as the British Association for Cardiovascular Prevention and Rehabilitation (BACPR) and the British Heart Foundation (BHF) the University has, through data reporting, helped increase uptake to rehab services across England. The ability to report on the extent by which programmes recruit from the total eligible population (presently at 51%) is helpful but the University also needs to focus our efforts on helping programmes innovate around meeting the needs of the 49% of patients that presently don't take up the offer of cardiac rehab. Last year this represented 65,344 actual patients missing out on cardiac rehab which is known to add quality years to life. Working with national associations such as the BACPR and the British Heart Foundation (BHF) the University has, through data reporting, helped increase uptake to rehab services across England which is estimated to have been associated with a significant reduction in premature death and hospital readmissions. The ability to report on the extent by which programmes recruit from the total eligible population (presently at 50%) is helpful but the University also needs to focus efforts on helping programmes innovate around meeting the needs of the 50% of patients that presently don't take up the offer of cardiac rehab. Last year this represented 67,396 actual patients missing out on cardiac rehab which is known to add quality years to life. HES Admitted Patient Care data enables NACR to report on uptake figures for cardiac rehabilitation in relation to the full eligible population. [1 paragraph unchanged] The success and widespread utilisation of the annual statistics report and research [18 words unchanged] inclusion in NHS England CCG reporting and a non-mandatory best practice tariff. The audit has also produced close to 20 primary research articles using the NACR dataset. The NACR data is quickly becoming known, internationally, as a leading source of data for real-world Cardiac Rehabilitation research. This is the culmination of over ten years of work and the essential part that the HES data plays in the produce from the yearly annual report. The audit has also produced over 25 primary research articles using the NACR dataset which is helping drive service change and impact. The NACR data is internationally acknowledged at leading the way and as a leading source of data for real-world Cardiac Rehabilitation research. This is the culmination of over ten years of work which HES data plays an integral role as well as informing the annual report.