NHS Digital Data Release Register - reformatted

The Royal College Of Surgeons Of England

Project 1 — DARS-NIC-15335-H0D1F

Opt outs honoured: Y

Sensitive: Non Sensitive, and Sensitive

When: 2016/12 — 2018/05.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012, Section 251 approval is in place for the flow of identifiable data, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012)

Categories: Anonymised - ICO code compliant, Identifiable

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatients
  • Office for National Statistics Mortality Data (linkable to HES)
  • Office for National Statistics Mortality Data
  • Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics

Benefits:

Purpose 1: The comparative information on clinical practice and outcomes will support health care organisations to benchmark their services and identify ways to reduce inappropriate variation in practice and to improve the outcomes of care. For example, the results of the national clinical audits have helped NHS services to reduce short-term mortality and complication rates after surgery. The results also identify unexplained differences between the processes of care within organisations or across regions that require local investigation. The results may also highlight gaps in the current body of clinical evidence or limitations in the methods used to evaluate health care performance, and thereby stimulate further research. There are various channels through which are results of the clinical audits are disseminated. The results of the audits/service evaluations are published as Annual reports, and are often promoted in the national media. Results are also published on the relevant audit websites. For the audits on bowel cancer, oesophago-gastric cancer, vascular surgery, this also includes the NHS Choices / MyNHS websites, as part of the NHS England policy of informing patients and the public about the care provided in NHS organisations. The results are disseminated at appropriate conferences, typically at annual national conferences attended by the surgeons / clinicians specialising in the treatment of specific patient groups (e.g. patients with bowel cancer). This is an established mechanism for feeding back findings to care providers / surgeons and bringing about improvements in care/practice. More generally, the audit outputs will be used to increase the understanding of patient treatment patterns and outcomes within NHS organisations. The outputs will support clinicians, NHS managers, policy makers and commissioners of care in their efforts to improve the quality of NHS care. The results will also support patients and the public by providing up-to-date information on the outcomes of care by NHS organisations and (for selected surgical procedures) by hospital consultant. Purpose 2: Like the national clinical audits, these projects typically also produce comparative information on clinical practice and outcomes. The results of these projects not primarily aimed at supporting benchmarking and so are not communicated directly to health care organisations. The benefit of the studies arises from increasing the evidence-base concerning the effective delivery of services at a national level, and has implications for policy makers and commissioners of care as well as for clinicians and NHS organisations. The outputs are therefore published in medical journals or disseminated at national/international conferences. As such, the outputs will contribute to increased knowledge among policy-makers and service providers about the degree of variation in the quality of care provided and the possible determinants of this variation. The projects typically address a medical area / patient populations that are known to be experiencing sub-optimal care and where improved knowledge will lead to actions to improve the cost-effective delivery of care. The results of some projects will also benefit patients and the public by providing up-to-date information on the outcomes of care by NHS organisations. A benefit of Project 13 (Patterns and outcomes of obstetric and gynaecological care delivered by English NHS trusts) will be improved access to information for particular patient groups on both obstetric and gynaecological care.

Outputs:

The primary outputs under this Agreement will be the provision of bespoke extracts of HES data and (where authorised) ONS data to internal CEU analysts for use in NHS Digital-approved purposes, each of which will result in secondary outputs of aggregated results. The outputs of the secondary analyses, always in the form of aggregated data, will be published in various formats (summary tables, graphs) and will typically be put in the public domain. Only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide will be included in any outputs. Purpose 1: The results produced by analyses of HES data will be published in various types of outputs produced by the clinical audit. These outputs will include Annual reports, as required by the audit commissioners (e.g., HQIP), information published on the relevant website for that audit (e.g. MyNHS), oral or poster presentations at national/international conferences on the conditions covered by the audits, and in peer-reviewed journal articles. The results will typically be one of the following: (1) a description of trends over time and regional variation in the number of patients treated in the English NHS, and the characteristics of patients being treated. (2) descriptions of trends over time and regional variation in the outcomes of care, or (3) evaluations of the performance of health care organisations by comparing their processes / outcomes of care after adjusting for the potential confounding effect of patient characteristics and treatment patterns. The next annual reports for the audits are due to be published as follows: 1. Bowel – December 2016 2. OGC – June 2017 3. Prostate – December 2017 4. NVR – November 2016 5. Breast cancer – April 2017 6. NELA – June 2017 7. Fragility Fracture – April 2017 8. Crane – January 2017 Purpose 2: Outputs will be produced to support clinicians and managers in individual NHS organisations (e.g. NHS trusts) undertake quality assurance activities (such as benchmarking) within these organisations, and support quality improvement activities. Outputs will be produced to support the commissioning process, and national policy development. Statistics will be derived at national and regional level, and by healthcare providers. These statistics may be stratified by relevant patient subgroups. The publication of these statistics will comply with the HES Analysis Guide These outputs will be included in reports to the commissioners of the work (e.g. NIHR), in information to be placed on pages of relevant websites, in oral or poster presentations at relevant national/international conferences, and in peer-reviewed journal articles. As the RCS is an academic organisation, there is a requirement for the CEU to contribute/distribute findings in a way that conforms to standard academic communication methods, namely, academic journals / conference presentations. In addition, analysts working on specific projects may use the work as source material for a higher-research degree (MD/PhD). Academic publications are not a primary aim of the work but are an effective and established way of ensuring wider dissemination of findings to encourage learning and increase utilisation of the work’s benefits. Some examples of previous outputs are given below: Examples from CRANE (Project 5) Fitzsimons KJ, Copley LP, van der Meulen JH, Panagamuwa C, Deacon SA. Grommet Surgery in Children With Orofacial Clefts in England. Cleft Palate Craniofac J. 2016 Jan 11. [Epub ahead of print] Fitzsimons KJ, Copley LP, Smallridge JA, Clark VJ, van der Meulen JH, Deacon SA. Hospital admissions for dental treatment among children with cleft lip and/or palate born between 1997 and 2003: an analysis of Hospital Episode Statistics in England. Int J Paediatr Dent. 2014 May; 24(3):200-8.. Fitzsimons KJ, Copley LP, Deacon SA, van der Meulen JH. Hospital care of children with a cleft in England. Arch Dis Child. 2013 Dec;98(12):970-4. Fitzsimons KJ, Mukarram S, Copley LP, Deacon SA, van der Meulen JH. Centralisation of services for children with cleft lip or palate in England: a study of hospital episode statistics. BMC Health Serv Res. 2012 Jun 10;12:148. Example from Jenny Neuburger NIHR Fellowship (Project 9) Peer-review papers Neuburger J, Currie C, Wakeman R, Tsang C, Plant F, De Stavola B, Cromwell DA, van der Meulen J. The Impact of a National Clinician-led Audit Initiative on Care and Mortality after Hip Fracture in England: An External Evaluation using Time Trends in Non-audit Data. Med Care. 2015 Aug; 53(8):686-91 Neuburger J, Harding KA, Bradley RJD, Cromwell DA, Gregson CL. Variation in access to community rehabilitation services and length of stay in hospital following a hip fracture: a cross-sectional study. BMJ Open Sep 2014; 4: e005469. Conference Contribution Neuburger, J.; Currie, C.; Wakeman, R.; Tsang, C.; Plant, F.; De Stavola, B.; Cromwell, D.A.; van der Meulen, J.; The Impact of the National Hip Fracture Database on mortality after hip fracture in England. Age and Ageing (2016) 45(suppl 1): i15-i15 Example from Gynaecological work (Project 11) Kiran A, Hilton P, Cromwell DA. The risk of ureteric injury associated with hysterectomy: a 10-year retrospective cohort study. BJOG. 2016 Jun;123(7):1184-91 The specific outputs expected for the current projects for Purpose 2 (Service Evaluation and Research) are submissions to relevant journals based on the health care topic being investigated. Submissions might be to a general medical journal for topics with a broad relevance to health care services (eg, BMJ, BMJ open), to a medical journal in a relevant medical discipline (eg, Age & Ageing, Archives of Disease in Childhood), or to a methodological journal (BMC health services research). It is not guaranteed that the preferred journal will accept submissions for publishing. • Project 9 - post doctoral fellowship Planned outputs will be one peer-review academic journal articles submitted in 2017, and one conference presentation. A report will be sent to NIHR at the end of the fellowship. • Project 10 - NIHR Multidisciplinary Collaboration for Leadership in Applied Health Research & Care (CLAHRC) North Thames – Atrial Fibrillation Project (Commissioned by NIHR). Planned outputs will be one peer-review academic journal article submitted in Summer 2017, and one conference presentation. • Project 11 - Gynaecological Urinary incontinence (Commissioned by NHIR Health Services and Delivery Research) Planned outputs for 2017 will be the submission of two peer-review academic journal articles, and one conference presentation. A report will be sent to NIHR at the end of the project in 2018. • Project 12 - Outcomes of delivery among preterm babies, including surgical care during infancy (Investigator-led, Wellcome Postdoctoral Fellowship) Planned outputs for 2017 will be the submission of two peer-review academic journal articles, and one conference presentation. • Project 13 - Patterns and outcomes of obstetric and gynaecological care delivered by English NHS trusts (Commissioned by Royal College of Obstetricians and Gynaecologists) Planned outputs for 2017 will be the submission of three peer-review academic journal articles, and two conference presentations. These will be on both obstetric and gynaecological care. A report on patterns of gynaecological care in England will be published on the RCOG website in 2017. • Project 14 - Patterns and outcomes of thoracic surgery (Commissioned by the Society for Cardiothoracic Surgery) A report will be produced for the Society for Cardiothoracic Surgery in Spring 2017. One journal article will be submitted to a peer-review journal in 2017.

Processing:

The HES dataset will be stored and accessed on the RCS secure server. The RCS secure server is set up with two partitions: the data management partition and the project-based analysis partition. The master HES dataset is stored on the data management partition of the secure server and will only be accessible by the CEU data managers. The project-based analysis partition stores the tailored sub-extracts of individual-level HES data (and, if required, ONS data) and has further access restrictions so that datasets provided to each project are only accessible to analysts within the project team. For each of the purposes described above, the project teams will provide the CEU data managers with a set of selection criteria for the patient cohort, specified in terms of the patient groups or surgical procedures being studied. The data managers will then produce an extract meeting these criteria and save it into a folder on the project-based analysis partition that only named project analysts can access. The access to each project folder is restricted by the server administrator (CEU data managers) so that the extracts can only be accessed by staff working on the project. Project analysts will use the data to describe trends and variation in patient numbers, case-mix, treatments and the processes, determinants and outcomes of care for a variety of patient groups of interest e.g. those with specified diagnoses and/or procedures. Comparative analyses at the provider or consultant level may be undertaken. All analysts will hold permanent or honorary contracts of employment with RCS. All permanent analysts are required to comply with the RCS data security policies and their terms of conditions prohibit the communication of confidential information that an individual to which they have access. The staff with honorary contracts are also required to comply with the RCS policies, and the terms and conditions of the RCS honorary contract include clauses requiring staff: • to comply with the RCS policies and procedures related to email and internet policies, and IT/data security • not to disclose and prevent unauthorised use of confidential information Projects undertaken at the CEU involve staff with honorary contracts because the projects require knowledge of both the medical context and methodological rigour, and so need multi-disciplinary project teams. The CEU is established as a partnership between the RCS and LSHTM in order to give access to staff with methodological knowledge and skills. Two senior LSHTM academics provide overall leadership a number of projects (6-8 projects). Other academics from LSHTM working in the CEU contribute to 1-2 projects. Their access to HES/ONS data is limited to extracts required for their allotted projects. Analysts on honorary contracts will require access for all the projects listed above under section 5a) apart from Project 8 (CRANE). This is broken down as follows; Project 1 - one member of staff substantively employed by LSHTM, with expertise in Epidemiology, Statistics and Health Services Research. Project 2 - two members of staff substantively employed by LSHTM with expertise in Statistics and Health Services Research, with one individual also specialising in Epidemiology. Project 3 - two members of staff substantively employed by LSHTM with expertise in Health Services Research, one individual also specialises in Epidemiology whilst the other in both Policy Analysis and Cancer Medicine. Project 4 - two members of staff substantively employed by LSHTM with expertise in Epidemiology, Statistics and Health Services Research. Project 5 - one member of staff substantively employed by LSHTM, with expertise in Epidemiology, Statistics and Health Services Research. Project 6 - two members of staff substantively employed by LSHTM with expertise in Epidemiology, Statistics and Health Services Research. Project 7 - two members of staff substantively employed by LSHTM with expertise in Epidemiology and Health Services Research, with one individual also specialising in Statistics. Project 9 - one member of staff substantively employed by LSHTM, with expertise in Statistics and Health Services Research. Project 10 - two members of staff substantively employed by LSHTM with expertise in Epidemiology, Statistics and Health Services Research. Project 11 - three members of staff substantively employed by LSHTM with expertise in Health Services Research. One individual also specialises in Health Economics whilst the other two in both Epidemiology and Statistics. Project 12 - one member of staff substantively employed by LSHTM, with expertise in Epidemiology, Statistics and Health Services Research. Project 13 - four members of staff substantively employed by LSHTM with expertise in Epidemiology, Statistics and Health Services Research and one individual also specialises in Health Economics. Project 14 - one member of staff substantively employed by LSHTM, with expertise in Epidemiology, Statistics and Health Services Research.

Objectives:

The Royal College of Surgeons of England (RCS) Clinical Effectiveness Unit (CEU) requires Hospital Episode Statistics (HES) and linked ONS mortality data for use in numerous activities specified within this purpose statement. Overall, these activities form a programme of Clinical Audit (Purpose 1) and Service Evaluation and Research (Purpose 2) into the hospital care received by adults and children in England. The overarching aim of this programme is to investigate differences in the pathways of care across NHS providers, English regions and over time, and produce results that help health services improve the outcomes of care for patients, both in terms of individual episodes of care and in terms of the care trajectory (i.e. the course of a patient’s illness over time and the care received to manage that course). The data will be stored on the RCS secure server, with access and analysis controlled by the CEU. The CEU will retain a single master copy of the data with access restricted to the two CEU data managers. Sub-teams from within the CEU will request bespoke extracts from the master copy strictly for use for one of the purposes described in this purpose statement. Requests must be approved by the Director of the CEU. Only requests for data extracts for use in activities described in this statement will be approved. For approved requests, tailored bespoke extracts of data will be created by a CEU data manager and provided to the internal CEU team working on the specific activity for a specific purpose and within a specific project. The data may not be used for any purposes other than those approved by the Director of the CEU and once the approved use of the data is complete, the subsets of data will be destroyed. No individual-level HES or ONS data will be transferred outside of the CEU or shared with other organisations. The CEU sub-teams may include individuals who are substantively employed by London School of Hygiene & Tropical Medicine, but hold honorary contracts with RCS. Data will only be accessed by individuals permanently employed by RCS or by individuals permanently employed by LSHTM who have honorary contracts of employment with RCS. The two overarching purposes for which the data will be used are as follows: Purpose 1: Clinical Audits commissioned by, or on behalf of, NHS England The RCS delivers a programme of national clinical audits and service evaluations examining the quality of care delivered by the English NHS. This work is commissioned directly by NHS England or indirectly via the Healthcare Quality Improvement Programme (HQIP). In general, audit teams use prospectively collected data for analysis and the production of statistics, and the audit findings are published in annual reports and other publications. The audits may involve the analysis of pseudonymised audit data linked to HES and other datasets and these linked datasets are provided under separate approved Data Sharing Agreements. Under separate Data Sharing Agreements, audit teams separately receive pseudonymised audit data linked to HES and other datasets for analysis and publication of statistics and findings in annual publications. Audit teams require bespoke extracts of HES and/or linked HES and ONS data to undertake analyses that will augment their work using the linked audit datasets. These extracts will not be linked with any audit data Audit teams will use standalone extracts of HES data for one or more of the following purposes only: a) Deriving information on clinical practice patterns and patient outcomes for English NHS organisations, which may be at one point in time (cross-sectional) or for a sequence of time points (time-series). Patterns of care for one or more conditions / procedures may be compared b) Determining case ascertainment of the clinical audits by using HES data to estimate the number of patients eligible for inclusion in the audit c) Assessing the differences between data collected on patients in Hospital Episode Statistics and the national clinical audits in relation to important data items (e.g. coding of procedures, and reporting of outcomes). This will involve comparing aggregated statistics and no direct linkage between the HES and the linked audit dataset. d) Assessing the differences between estimated survival on patients in Hospital Episode Statistics and the national clinical audits using the HES-linked ONS mortality data. This will involve comparing aggregated statistics and no direct linkage between the HES/ONS and the audit dataset. The audit teams may use the HES data as a standalone source of national healthcare data to produce either aggregate information that complements information derived with data from the national clinical audits or to produce information requested by the steering committees of the audits but which cannot be produced from data available to the audit (such as changes in patterns of care over time that extends into time periods before the start of the audit). ONS mortality data will be used for reporting survival statistics. The information will be produced at an appropriate aggregate level to support quality assurance activities (such as benchmarking), and will be used to support quality improvement activities within hospitals, the commissioning process, and policy development. Statistics will be derived at national and regional level, and by healthcare providers. No data will be shared with third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. To achieve these purposes, audit teams must request from the CEU data manager specific filtered extracts of the HES data for patient groups of interest, defined in terms of groups of diagnoses and/or procedures. For example, an extract of all episodes relating to a specific surgical procedure (lower-limb amputation) or diagnosis (peripheral arterial disease) within a specified timeframe. The extracts may also include all admissions for these patients, either to calculate comorbidity scores (from past admissions) or examine future use of health care after an index event. Finally, to answer a specific question, the extracts may include patient groups that fall outside the eligibility criteria of an audit, either to provide a comparative control group or to understand why patients are not being entered into the audit (e.g. stroke patients who would be eligible for a carotid endartectomy but did not receive one). In relation to the selection of patient records from outpatient and A&E datasets, the limited amount of diagnostic / procedure information available on patient conditions means that patient records are typically flagged for extraction by either (1) first identifying patients within the inpatient dataset and then using their HESID to identify their records in the outpatient or A&E datasets and thereby construct their care trajectories, or using broad selection criteria such as main specialty (mainspef) and whether a patient is making their first or follow-up attendance (first attendance). The poor completeness of the diagnostic and procedure fields means it is not feasible to restrict the requested A&E and outpatient data to particular patient subsets. The current national clinical audits that the Clinical Effectiveness Audits are commissioned to deliver are: • Project One - National Bowel Cancer Audit; This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project Two - National Oesophago-gastric Cancer Audit This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project Three - National Prostate Cancer Audit; This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project Four - National Vascular Registry; This project will use the following data: pseudonymised HES APC 2000/01-2015/16, HES OP 2010/11-2015/16 and ONS mortality 2000-2016. • Project Five - National Audit of Breast Cancer in Older People; This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project Six - National Emergency Laparotomy Audit This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project Seven - the Falls & Fragility Fractures Audit Programme. This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and HES A&E 2010/11-2015/16. The use of ONS mortality data is not required or permitted for this project. • Project 8 - the Cleft Registry and Audit Network (CRANE) project. This project will use only the following data: identifiable HES APC (maternity data) 2000/01-2015/16 and ONS mortality 2000-2016. Purpose 2: Service evaluation and research The CEU undertakes projects that are either commissioned by the Department of Health, research-funding body (e.g. NIHR), public bodies or charities (medical associations) or investigator-led from within the CEU. All such projects aim to provide information that will be used to improve health services and patient care. CEU does not undertake work using HES data commissioned by commercial organisations or for commercial purposes. For these projects, data from HES may be used for the purposes of: a) describing trends over time and regional variation in the number of patients treated in the English NHS, and the characteristics of patients being treated; b) describing trends over time and regional variation in the outcomes of care, and assessing whether differences observed among patient groups indicates problems of access or quality of care; c) evaluating the performance of specific health care organisations by comparing their outcomes of care after adjusting for the potential confounding effect of patient characteristics and treatment patterns. To achieve the purposes, project teams may request specific filtered extracts of the HES data from a CEU data manager, for a patient group of interest, defined either by groups of diagnoses and/or procedures. For example, an extract of all episodes relating to a specific surgical procedure (lower-limb amputation) or diagnosis (peripheral arterial disease) within a specified timeframe. The extracts may also include all admissions for these patients, either to calculate comorbidity scores (from past admissions) or examine future use of health care after an index event. The geographic scope of such projects is usually national and the subject can cover a wide variety of conditions or types of episodes. For this reason, the RCS CEU need to hold national data that is not limited to specific conditions or minimised by data years. Where appropriate approvals are in place, linked ONS mortality data may be used for reporting survival after a hospital episode or because death is a competing risk for the studied outcome (e.g. a patient cannot be re-admitted if they have died). Use of ONS mortality data is limited to the specified projects and users only. The information produced by the analysis of these HES data will be presented at an appropriate aggregate level to support quality assurance activities (such as benchmarking) within these organisations, and support quality improvement activities within hospitals, the commissioning process, and policy development. No data will be shared with third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. The publication of these statistics conforms to the ONS guidance on publishing small numbers. The current service evaluation projects being conducted within the CEU are: • Project 9 - post doctoral fellowship The aim of the project is to evaluate the impact of changes to hospital services for older people with a hip fracture. It will focus on which national policy changes, and which local changes to hospital services, have been effective in improving patient care and reducing hip fracture mortality over the last decade. This project will use the following data: pseudonymised HES APC 2000/01-2015/16 and ONS mortality 2000-2016. • Project 10 - NIHR Multidisciplinary Collaboration for Leadership in Applied Health Research & Care (CLAHRC) North Thames – Atrial Fibrillation Project (Commissioned by NIHR). This aims to investigate patient pathways that span sectors and organisations, with a focus on patients with atrial fibrillation. This project will use only the following data: pseudonymised HES APC 2000/01-2015/16. The use of ONS mortality data is not required or permitted for this project. • Project 11 - Gynaecological Urinary incontinence (Commissioned by NHIR Health Services and Delivery Research) The aim of the project is to improve the delivery and organisation of surgical services for women with urinary incontinence in England. It will study the use of gynaecological services (especially surgical care) for women with urinary incontinence, and the patient outcomes. This project will use the following data: pseudonymised HES APC 2000/01-2015/16; HES OP 2010/11-2015/16; HES A&E 2010/11-2015/16. The use of ONS mortality data is not required or permitted for this project. • Project 12 - Outcomes of delivery among preterm babies, including surgical care during infancy (Investigator-led, Wellcome Postdoctoral Fellowship) This aims to examine the maternal risk factors and health care activities associated with the birth of pre-term babies, (2) how a preterm birth as well as hospital practice influences hospitalisation patterns in mothers and infants. This project will use only the following data: identifiable HES APC (maternity data) 2000/01-2015/16. The use of ONS mortality data is not required or permitted for this project. • Project 13 - Patterns and outcomes of obstetric and gynaecological care delivered by English NHS trusts (Commissioned by Royal College of Obstetricians and Gynaecologists) This aims to describe comparative patterns of maternity care and gynaecological services in English NHS trusts, identifying areas of variation in practice and where improvements in the delivery of care are required. The project is being run in two phases, focusing first on maternity care and then gynaecological care. This project includes the development and validation of performance indicators based on (1) reviews of the literature, (2) extensive consultations with groups of national clinical experts, and (3) the use of a validation framework to demonstrate that the performance indicators are fit-for-purpose. The indicators form the basis for national reports of obstetric care, gynaecological services for benign conditions, and gynaecological services for malignant conditions. This project will use only the following data: identifiable HES APC (maternity data) 2000/01-2015/16. The use of ONS mortality data is not required or permitted for this project. • Project 14 - Patterns and outcomes of thoracic surgery (Commissioned by the Society for Cardiothoracic Surgery) The aim of this project is to examine patterns of surgery for patients with pleural sepsis and pneumothorax across NHS hospitals, looking at both open and thoracoscopic procedures, with the objective of providing a report describing the outcomes of care such as length of stay, in-hospital mortality, and readmission within 30 days. This project will use only the following data: identifiable HES APC 2000/01-2015/16. The use of ONS mortality data is not required or permitted for this project. GENERAL OPERATION OF PURPOSE 1 AND 2 The CEU will begin one or two projects per year, and have up to 10 projects running concurrently. Each project typically requires an annual refresh of its HES extract. Projects usually have a lead-time of 3-6 months before commencing, during which time RCS will apply to NHS Digital (and ONS as required) for approval to reuse the data already held for the purpose of the new project(s). The data will not be used for any project that has not been specifically approved by NHS Digital (and ONS as required). The timeframes for delivery will depend on the length of the project. The time between deliverables typically ranges from between 3 and 12 months. For both purposes and all projects described, the data will be stored and processed exclusively within the CEU and no data will be shared with third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. There are several reasons for requesting the provision of a master copy of the HES and linked ONS dataset to the CEU. First, the programme of clinical audit and service evaluation examines the hospital care received by adults and children within all England. A master copy of HES/ONS is required to enable CEU to investigate differences in the care trajectory of patients as they move across NHS providers over time, and to assess the degree to which care varies across providers and geographical regions (the HES data will describe the trajectory of care, the ONS data is required to determine that the trajectory has ended). Second, it will negate the need for CEU to obtain individual datasets per audit/project on an ongoing basis. Obtaining individual datasets will result in duplication of HES records and ONS data held by the CEU. Thus, having a single large dataset rather than many smaller extracts reduces the risk of disclosure, increases the efficiency of extract production for the CEU and NHS Digital by reducing the number of extract requests, minimises the risk of project non-delivery given the frequency of extract generation and the limited time from extract creation to reporting. The data will only be used for the purposes described above and for projects that have been individually approved by NHS Digital (and ONS as required). Data will only be retained if there is a requirement for its use in one or more approved project. Individuals working on each project will only be permitted to access a HES data extract relating to that project. Where ONS data is required, access is only granted to the named individuals associated with that project under authorised usernames and who have the required legal approvals. All data access is password controlled. The controls enable a single copy of the data to be held, reducing security risk associated with multiple copies being provided per project. The information produced by the projects will be primarily for patients, their carers and the public, NHS providers, commissioners and other public-sector bodies, and will typically be published as public documents.


Project 2 — DARS-NIC-26815-F8H6B

Opt outs honoured: N, Y

Sensitive: Non Sensitive, and Sensitive

When: 2017/03 — 2017/05.

Repeats: One-Off

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Anonymised - ICO code compliant, Identifiable

Datasets:

  • Patient Reported Outcome Measures
  • Office for National Statistics Mortality Data (linkable to HES)
  • Hospital Episode Statistics Admitted Patient Care

Benefits:

This project investigates the impact of long-term conditions on access and outcomes of joint replacement as an example of elective surgery. The research is funded by the NIHR CLAHRC North Thames and forms part of the NIHR CLAHRC North Thames’s Methodological Innovation Theme where multimorbidity is a priority as it is increasingly prevalent given the ageing of the population. The methodological theme has five strategic priorities and this project addresses two of them: using data sources from patients to investigate outcomes and using linkage of data to enable research relevant to the increasingly complex pathways for patients within the NHS. The project has a number of key objectives. First, this study will for the first time validate an instrument identifying comorbidities reported by patients against administrative hospital data. Several patient-reported comorbidity instruments exist but no instrument has been validated. Therefore this validation study will be a key methodological achievement as it will provide a robust approach for studies addressing the issues of multimorbidity. Second, the project will also produce outputs highlighting potential inequalities in access to elective surgery – partly by using the validated patient-reported morbidities. It is important to know to what extent general practitioners and surgeons are influenced by long-term conditions when they decide whether or not to recommend surgery for patients. This project will provide insight in current practice and in that way inform recommendation to ensure that all patients who have the capacity to benefit, irrespective of age and presence of long-term conditions, will be able to have access to elective surgical care. Third, the project will also provide further insight into the impact of long-term conditions on the outcomes of orthopaedic surgery which will further help to refine recommendation for the indication of orthopaedic surgery in patients with long-term conditions. Fourth, the project is also a case study that would allow an investigation of the issues that need to be overcome when data from a number of different sources is linked at patient level. In summary, the outputs of the project will be of immediate benefit for patients in the NHS as it will strengthen the methodological approach to address the issues related to the care for patients with long-term conditions, and issues which is likely to be increasingly relevant in the years to come. Outputs of this project will be used by other researchers within the NIHR CLAHRC North Thames, within the NHS and by other research groups abroad involved in health services research and service evaluation. As the project is funded by the NIHR CLAHRC North Thames, the findings and recommendations will be disseminated through the CLAHRC North Thames network to enable commissioners and policy makers to raise standards of care for patients with long-term conditions. The methodological findings in using the PROMS linked HES/ONS data will also be of benefit to future use of the data in health research for the benefit of patients and the healthcare system.

Outputs:

The main forms of dissemination will be through the publication of research articles in academic journals (to be decided). Results will also be disseminated by presentation at relevant conferences. Outputs will also be disseminated through the NIHR CLAHRC North Thames. The CLAHRC as part of the National Institute for Health Research, use the skills, knowledge and expertise of researchers, health and social care professionals, managers, commissioners and patients to conduct high quality research projects to find new ways of improving healthcare. It's aim is to ensure the results of the research are translated quickly and effectively into benefits for patients, the wider NHS and social care. Outputs will also be made freely accessible to the general public. Three main papers are anticipated; one for each of work packages 3, 4 and 5. Academic articles: 1. Assessing the validity of patient-reported long-term conditions. (June 2017) 2. Publication of a paper describing the findings from the analysis of the severity of symptoms and duration of symptoms at time of surgery for patients with different long-term conditions. (June 2018) 3. Publication of a paper describing the findings from the analysis of outcomes for patients with different long-term conditions (June 2018) This research provides methodological output for the 'methodological innovations ' which is one of the 5 broad research themes of the CLAHRC North Thames. This is research investigating novel ways of carrying out research to improve the way in which researchers work, for the benefit of patients, the public and the NHS. By addressing known methodological limitations in the way applied health research is currently carried out, this theme works to develop and test novel methods to enhance the efficiency, timeliness and usefulness of applied health research. In summary, the findings will be presented to academic bodies through attending academic and clinical conferences and through academic publications to engage with other academics, orthopaedic surgeons, physiotherapists and General Practitioners. In addition the findings will be disseminated through the NIHR CLAHRC North Thames, the funders of this study, and whose key priority is to translate applied health research into direct impact on the health of patients with long term conditions and on the health of the public. This involves regularly presenting to healthcare professionals, patients and the public in the NIHR CLAHRC North Thames geography (including a patient and public involvement research advisory panel). A poster on this study has already been presented at the last NIHR CLAHRC North Thames Showcase. The findings will also be shared with NHS England and other commissioners as this will directly inform current challenges relating to access to elective joint replacement surgery in the NHS as reported in the media (e.g. http://www.bbc.co.uk/news/uk-england-hereford-worcester-38770046). Lastly, the findings will be published on the NIHR CLAHRC North Thames, London School of Hygiene and Tropical Medicine and the Royal College of Surgeons of England website. A PhD thesis will also be an output of this work.

Processing:

The Royal College of Surgeons of England (RCS) is requesting a bespoke data linkage of PROMs to corresponding HES episode, historical HES episodes dating back to 2003 and ONS mortality data for patients who have participated in the PROMs programme and who underwent a hip or knee replacement surgery. The process will involve: 1. NHS Digital provide the RCS a bespoke data extract of PROMs data linked to the corresponding HES episode, linked to historical HES admissions and subsequent HES admissions, and finally also linked to ONS mortality data all linked by encrypted HESID. 2. Extract will be received by the RCS by file transfer and stored on the RCS secure server. 3. The historic HES records of patients will be used to locate patients with long-term conditions. 4. Subsequent HES episodes will be used to identify patient outcomes. 5. A single patient-level dataset for the PROMs cohort will be created including long-term conditions and outcomes. The main analysis will be on this patient-level dataset. No other data will be used or linked to the data provided by NHS Digital. The data analysis will be completed at The Clinical Effectiveness Unit (https://www.rcseng.ac.uk/standards-and-research/research/clinical-effectiveness-unit/) at RCS by the three people listed in this document; these are the only people who will have access to the data. The Clinical Effectiveness Unit at the Royal College of Surgeons of England is an academic collaboration with the Health Services Research & Policy department (formerly Health Services Research Unit) at London School of Hygiene and Tropical Medicine. Only substantive employees of the Royal College of Surgeons and one member of the team with honorary contract with the Royal College of Surgeons has access to the data and will only use it for the purposes described in this document. The data manager and controller, is substantively employed by the CEU at the Royal College of Surgeons. The data will be managed, controlled and analysed exclusively at the Royal College of Surgeons. The project as a whole is sponsored by the London School of Hygiene and Tropical Medicine. The project is funded by the National Institute of Health Research (NIHR) Collaborations for Leadership in Applied Health Research and Care (CLAHRC) North Thames. The data will not be linked to any other dataset held at RCS. After undertaking statistical analysis, outputs will be in the form of tables containing aggregated data with small numbers suppressed in line with the HES Analysis Guide.

Objectives:

The objective for processing is to; 1. support a research study that aims to determine the access to and outcomes of elective hip and knee replacement surgery for patients with long-term conditions. 2. provide methodological analysis for use in the care of patients with long term conditions. The Royal College of Surgeons of England (RCS) would like to investigate the access to and outcomes of elective hip and knee replacement surgery for patient with long-term conditions (LTC) who have participated in the PROMs programme using the PROMs, HES and ONS datasets. There will be five work packages in this project; 1. the first will consist of a systematic review on the key topics of access to and outcomes of hip and knee replacement surgery. 2. Work package two consists of a qualitative study to understand the barriers and facilitators to accessing hip and knee replacement surgery for patients with LTCs. 3. Work package three will be to assess the validity of patient-reported LTCs against LTCs recorded in HES. 4. Work Package four will be to describe the variation in the access to and utilisation of hip and knee replacement surgery for patients with different LTCs. 5. The final work package will be to describe the variation in the outcomes of hip and knee replacement surgery for patients with different LTCS For this study the RCS is requesting that NHS Digital link the PROMs datasets with the corresponding HES episode, historical HES episodes dating back to 2003 and ONS mortality datasets. The data requested will be used in work packages 3,4 and 5 as described in the following; PROMs data will be used for the validation work in work package 3 and for investigating variations in access and outcomes in packages 4 and 5. Historical HES data will allow the validation of the identification of long-term conditions in both PROMS and HES datasets and will lead to a better understanding of how reliably long-term conditions are recorded in HES (Work Package 3). This linkage will also allow the study of the patient outcomes after the hip and knee replacement surgery (Work Package 5). Lastly the linkage will also enable casemix adjustment for age, sex, ethnicity and socioeconomic status (Work Package 3-5). Linkage with ONS mortality data will provide date of death and underlying cause of death for those patients in the PROMs dataset who were discharged from hospital alive (Work Package 5)


Project 3 — DARS-NIC-383345-W2D3J

Opt outs honoured: Y

Sensitive: Non Sensitive, and Sensitive

When: 2016/12 — 2017/08.

Repeats: One-Off

Legal basis: Section 251 approval is in place for the flow of identifiable data, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Categories: Identifiable

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Outpatients
  • Office for National Statistics Mortality Data (linkable to HES)

Benefits:

Over 650,000 mothers give birth every year in England, and there has been growing recognition of the need for evidence on how maternal factors prior to and during pregnancy affect childhood service use and outcomes. For example, NHS Digital are developing a new Maternity and Children’s Data Set linking prospective mother and child data, in order to commission services in a way that improve health and reduce inequalities; HQIP have funded the RCOG to run the National Maternity and Perinatal Audit, which will evaluate the quality of care received by women and newborns in the UK. Outputs from this study will add to and complement both of these initiatives by providing detailed information on trajectories of care for mothers and babies, and evaluating changes in service use over time using retrospective data analyses. This study will directly benefit the Health and Social Care sector by providing healthcare professionals, NHS managers, commissioners and policy makers with detailed evidence to inform policy and aid decision making in relation to maternal and paediatric healthcare services. Specifically, these outputs will provide information on variation in healthcare use in NHS organisations, which will be used to help to reduce inappropriate variation in practice and to improve outcomes of care for specific groups of mothers and babies; this research will provide detailed information on maternal and infant hospitalisation patterns and outcomes which will be used to identify which groups would benefit from increased support prior to birth, or intervention prior to delivery or following birth. As well as presenting to paediatricians and other clinicians at national and international conferences, this study team will work with clinicians on the study Steering Group and members of the Royal College of Obstetricians (RCOG) and the Royal College of Surgeons (RCS) to ensure that the outputs of this study are used to support clinicians, policy makers and commissioners in their efforts to improve the quality of NHS care. The study team is also closely linked with ongoing maternity service evaluation conducted by the Royal College of Obstetricians. Similar RCOG studies have had clear benefits for the Health and Social Care sector, for example by providing evidence on modifiable risk factors for stillbirth to inform better monitoring during pregnancy, and by informing NICE guidelines relating to providing patients with information explaining the long-term consequences of prematurity. Results will also provide evidence to support the Children and Young People’s Health Outcomes Forum and the National Child and Maternal Health Intelligence Network. Therefore, this will directly influence policy, through adding to the body of evidence to allow policy-makers to improve maternity and paediatric services across the UK, and supporting them to meet the needs of women giving birth in England and their families.

Outputs:

The outputs of the analysis, in the form of aggregate data with small numbers suppressed ( in line with the HES Analysis Guide), will be submitted for publication in peer-review journals and presented at national and international conferences. The study has received funding from the Wellcome Trust, who will support the publication of results in open access journals and ensure the wide dissemination of this study’s results to healthcare professionals, NHS managers, commissioners and policy makers. The study team is also closely linked with ongoing maternity service evaluation conducted by the Royal College of Obstetricians ( RCOG) . The RCOG set standards for clinical practice, publish clinical guidelines and patient information leaflets, contribute to policy development, and advise the government and other public bodies on healthcare matters RCS aim to make their results available in both clinical and methodological forums: RCS will aim to submit abstracts for presentation at the following conferences within 1 year of data access: * International Population Data Linkage Network, *Society for Longitudinal and Lifecourse Studies, *Public Health Science, Society for Social Medicine. RCS will aim to submit publications to the following journals within 2 years of data access: *International Journal of Epidemiology, *Journal of Clinical Epidemiology, *PLoS One, *Archives of Disease in Childhood, Paediatrics. All papers will be published with open access. Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide. Data will not be used for sales or marketing purposes.

Processing:

The data requested will only be accessed by staff within the RCS on a need to know basis and only for the purposes of this application, not for any other purposes. Data will be stored on the secure server at the Royal College of Surgeons (RCS) and will be accessed by substantive employees of the Royal College of Surgeons and the research fellow, who has an honorary contract with RCS. Date of birth is required to calculate accurate post-natal length of stay and time to readmission. To identify corresponding maternal and baby records (linking mother to baby), RCS will use non-disclosive, clinical and demographic variables common to both maternal and baby HES admission records. These would be episode dates, provider code, postcode district, GP practice and delivery information. Agreement between HES and national aggregate published data from the Office for National Statistics will be assessed, in relation to distributions of important data items (e.g. gestational age, birth weight, maternal age).

Objectives:

Royal College of Surgeons (RCS) request patient-level Hospital Episode Statistics (HES) to support a programme of work on maternal and child health, specifically focusing on how maternal factors prior to and during pregnancy affect childhood service use and outcomes. RCS propose to link key characteristics from maternal admission records to hospitalisation patterns for their offspring, and to use this information to provide an integrated approach for understanding infant healthcare use and childhood outcomes. Linked hospital data on mothers and their offspring has been used to support service evaluation, planning, and research in smaller populations (including within Scotland, Australia, the US, Canada, and the Netherlands) and prospective mother-child data will be made available as part of the Maternity and Children’s Data Set (http://content.digital.nhs.uk/maternityandchildren?tabid=2). Bringing together information on mothers and their offspring using retrospective, national hospital data in England will allow RCS to evaluate maternal and household determinants of service use and outcomes in children, on a substantially larger and more detailed scale than previously possible. Firstly, RCS will analyse HES data to investigate how maternal hospitalisation patterns are related to birth outcomes and childhood readmissions. Determinants of variation in healthcare use and outcomes will be described for a variety of patient groups, defined either by specific diagnoses and/or procedure (e.g. obstetric procedures, pregnancy-related conditions, chronic conditions, mental health or indicators of social risk/adversity). Secondly, RCS will bring together information on outcomes of previous pregnancies to investigate how previous birth outcomes and inter-pregnancy interval influence childhood outcomes and hospitalisation patterns. Finally, RCS will combine information on healthcare use in mothers and all her offspring, to determine changing influences throughout childhood. This increasingly complex information will help RCS to understand how determinants of healthcare use change through childhood – i.e. from clinical birth outcomes in infancy to maternal and household influences throughout childhood.


Project 4 — DARS-NIC-96472-W0K5S

Opt outs honoured: Y

Sensitive: Non Sensitive

When: 2017/09 — 2018/05.

Repeats: Ongoing

Legal basis: Section 251 approval is in place for the flow of identifiable data

Categories: Identifiable

Datasets:

  • MRIS - List Cleaning Report

Benefits:

The benefit of the list-cleaning service is that deceased individuals will be removed from the mail-outs, the latest addresses for patients will be used and only patients that have not raised a type II objection will be sent a survey. This minimises the likelihood of any distress caused to bereaved families and ensures that questionnaires are distributed to the correct address. Overall, the project has benefits which are namely: 1. To evaluate the quality of prostate cancer services in England 2. To determine the variance in the process and outcomes of prostate cancer care in England for the purpose of driving quality improvement 3. To publish comparative local outcomes, along with associated commentary, to enable patients to understand the quality of care being offered when making treatment decisions with regard to their prostate cancer care The findings from these analyses will contribute to changes in clinical practice ensuring that patients receive the best care possible and experience an improved quality of life. Patient-reported outcomes and experience measures (PROMs and PREMs) following radical local treatment of prostate cancer are collected using a survey distributed to individual patients in England 18 months after diagnosis and subsequent treatment. They provide valuable information enabling clinicians to assess the overall effects of treatment and health care providers to study and understand variation in practice and outcomes in different geographical areas. The outputs will be reported in the NPCA annual report due for publication in November 2017. The NPCA outcomes are published in annual reports and scientific journals. The intended audience are clinicians, healthcare professionals, Medical Directors, Chief Executives, audit managers, commissioners, NHS England, Welsh Assembly Government, public and patients. Trusts and Health Boards will use the outcomes in the annual reports to assess the care they provide.

Outputs:

The results of the NPCA are published in annual reports which are available on the audit’s website (www.npca.org.uk) and are sent directly to all extended Trust teams providing prostate cancer care throughout England. The extended Trust teams include members of clinical teams (including Lead Clinicians and MDT coordinators), representatives from clinical audit departments (including clinical audit managers) and cancer services (including cancer managers). The NPCA professional bodies (British Association of Urologists, British Uro-Oncology Group), data collection partner (The National Cancer Registration and Analysis Service) and stakeholder groups (including British Association of Urological Nurses Prostate Cancer UK, Tackle Prostate Cancer, Public Health England, Health Quality Improvement Partnership) have representation on the NPCA’s Clinical Reference Group and contribute to the development of the annual report. All relevant professional bodies and stakeholder groups receive the final results presented in the annual report under embargo prior to publication for dissemination. The target publication date of the next NPCA Annual Report is November 2017. Publication of the annual report is accompanied by press activities including national media, relevant professional bodies and stakeholder organisations in order to maximise accessibility to the widest audience. Summaries of these reports are also prepared for patients and the general public and available on the audit website alongside additional information. NPCA results are also communicated in conference presentations, peer-reviewed publications and MD/PhD theses.

Processing:

Quality Health Limited will submit a data file to NHS Digital containing limited Patient Identifiable data fields (name, surname, date of birth, postcode, gender and NHS number) for patients in the NPCA PROMs cohort on a monthly basis. NHS Digital will perform a list-cleaning service and provide Quality Health Limited with the latest demographic details including fact of death and confirmation of address details for those patients who have not raised a type 2 objection. Access to the data is limited to Quality Health Limited and will only be used for the purpose of this Agreement. The administration of the questionnaire will be carried out by Quality Health Limited who will act as a central data collection centre. For the cohort of men identified from the NPCA prospective audit, Public Health England will transfer minimal patient identifiable information including names and addresses, post code, date of birth, NHS number and a unique NPCA identifier to Quality Health Limited. Quality Health Limited will pass these details on to NHS Digital for list cleaning as described above, which will be performed and data returned to Quality Health Limited on a monthly basis. Following receipt of the completed questionnaires, Quality Health Limited will provide collated pseudonymised response data to the NPCA team in the Clinical Effectiveness Unit (CEU) at the Royal College of Surgeons (RCS) for analysis, which will be subsequently linked by the NPCA team to pseudonymised patient-level data from NPCA prospective audit data provided by Public Health England on the basis of unique NPCA identifiers and age at diagnosis (years). Description of overall dataflow for the NPCA patient survey: Patient-level data are submitted by NHS Trusts to the National Cancer Registration and Analysis Service (NCRAS), which is run by Public Health England (the NPCA data collection partner) as part of the NPCA prospective audit on a monthly basis. The NPCA team at the RCS do not receive any confidential patient identifiers in the routine extracts of pseudonymised NPCA patient-level audit data provided by NCRAS, PHE. Confidential patient identifiers (NHS number, patient name, address, postcode and date of birth) for the patients in the NPCA cohort are securely transferred by NCRAS to Quality Health Limited for the purpose of administering the NPCA patient survey. Section 251 approval (15_CAG_0143_NPCa Patient Survey) is in place for the transfer of minimal patient data (collected as part of the NPCA prospective audit) to enable Quality Health Limited to remove any duplicates and to carry out the following: 1. Before a questionnaire is sent out to a patient at their home address Quality Health Limited are required to undertake deceased checks to minimise any distress caused to bereaved families. 2. Due to the time lag between diagnosis and administration of the questionnaire it is also necessary to ensure the patient address held is current. Data collection in England started in October 2015. A response rate of 75% was achieved in the first six months of the NPCA patient survey demonstrating the successful engagement of patients in the collection of NPCA PROMs/PREMs (Patient Reported Experience Measures) data. Further to the instruction of the Secretary of State to NHS Digital in April 2016 to remove the records of patients who have requested a type 2 opt out, the dataflow from NCRAS to Quality Health Limited ceased as NCRAS are unable to identify patients who have raised a type 2 objection and in order to adhere to upholding type 2 objections it is necessary for the RCS to request an MRIS List Clean via NHS Digital. As agreed with NHS Digital, this DARs application is to substitute Quality Health Limited's access to NHS Digital's PDS/DBS checking service with NHS Digital's listing cleaning service. Quality Health Limited would submit a data file to NHS Digital containing limited PI data fields (name, surname, date of birth, postcode and NHS number) for patients in the NPCA PROMs cohort on a monthly basis. The objective of the processing is to provide the latest demographic details including fact of death and confirmation of address details only for those men in the NPCA survey cohort who have NOT raised type 2 objections in England. Only substantive employees of Quality Health Limited would have access to the List Cleaning data returned form NHS Digital. The List Cleaning data supplied from NHS Digital will not be accessed, processed or stored overseas. Following receipt of the completed questionnaires, Quality Health Limited provide collated pseudonymised NPCA PROMs/PREMs survey response data to the CEU without confidential patient identifiable information. The data flow to the NPCA is pseudonymised. None of the datasets received by the NPCA at the Clinical Effectiveness Unit (CEU), RCS contain confidential patient identifiers. There is separation of identifiers and analysis datasets in the data flow. This includes extracts of NPCA prospective audit data provided by the NCRAS and NPCA PROMs/PREMs response data provided by Quality Health Limited. NHS number, patient name, addresses, date of birth, hospital patient ID and postcode are not included in any extract of NPCA data received by the CEU for analysis. The NPCA team at the CEU link pseudonymised NPCA PROMs/PREMs survey response data with pseudonymised NPCA prospective audit clinical data on the basis of a unique NPCA identifier and age at diagnosis (years). Patient cohorts: From the NPCA prospective audit patient population, the following cohorts of men in England are identified for the NPCA PROMs/PREMs: Men diagnosed with localised (non-metastatic) prostate cancer (ICD-10 diagnostic code of C61 - malignant neoplasms of the prostate) between: 1) 1 April 2014 and 31 March 2015 who underwent radical treatment (n = 15,000), and 2) 1 April 2015 and 31 March 2016 who are candidates for radical treatment (irrespective of treatment) (n = 25,000) Questionnaires are sent to men 18 months after diagnosis. Prior to the implementation of type II objections by NHS Digital, surveys were previously sent to men diagnosed between 1 April 2014 and 31st September 2014. A response rate of 75% was achieved.

Objectives:

Quality Health Limited require a MRIS List Cleaning Report to carry out mortality checks and retrieve the current patient address for those men in the National Prostate Cancer Audit survey cohort, who have not raised type 2 objections, in England for the purpose of administering a Patient Reported Outcome Measures (PROM) survey of men diagnosed with prostate cancer. Before a questionnaire is sent out to a patient at their home address deceased checks are required to minimise any distress caused to bereaved families. Due to the time lag between diagnosis and the administration of the questionnaire it is also necessary to ensure the patient address held is current. The National Prostate Cancer Audit (NPCA) was commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit Programme. The Royal College of Surgeons was awarded the contract for the audit, which started on 1st April 2013, and is managed as a partnership between a team of clinical, cancer information and audit experts from the British Association of Urological Surgeons, the British Uro-oncology Group, the National Cancer Registration Service and the Royal College of Surgeons. Other stakeholder groups include British Association of Urological Nurses, Prostate Cancer UK, and Tackle Prostate Cancer. The British Association of Urological Surgeons and the British Uro-oncology Group are not considered to be data controllers for the purpose of this application and along with other stakeholder groups will only have access to aggregated outputs with small numbers suppressed. The overall aim of the NPCA and patient survey is to assess the process of care and its outcomes in men diagnosed with prostate cancer in England and Wales. The principal audit questions examine the following against the available appropriate national clinical standards: • service delivery and organisation of care in England and Wales • characteristics of newly-diagnosed prostate cancer, how the cancer was detected and the referral pathway • diagnostic and staging process and planning of initial treatment • initial treatments received • patient experience and health outcomes 18 months after diagnosis • overall and disease-free survival • feasibility of a Prostate Specific Antigen (PSA) testing audit in primary care The collection of patient-reported outcome measures (PROMs) was included in the NPCA because radical treatment for prostate cancer may adversely affect sexual function, urinary continence, and bowel function. These outcomes are seen as important performance indicators of the management of men with localised treatment as they are available relatively soon in the course of the disease. In contrast, it would take many years before performance indicators based on (the absence of) disease-progression or survival will become meaningful.