NHS Digital Data Release Register - reformatted

The Royal College Of Surgeons Of England projects

• National Cancer Audit Collaborating Centre (NATCAN)
• National Vascular Registry - patient level HES and Civil Registration/Mortality data request
• National Lung Cancer Audit - NCRAS data request
• Bespoke Data Linkage - renewal
• Project 5
• The access to and outcomes of elective joint replacement surgery for patients with long-term conditions: a study using PROMs and administrative data
• Maternity - Birth Data Study HES Extract

344 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

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National Cancer Audit Collaborating Centre (NATCAN) — DARS-NIC-709865-W9X6H

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, Identifiable, No (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Non-Sensitive, and Sensitive

When:DSA runs 2023-10-27 — 2025-09-30 2023.11 — 2024.08.

Access method: Ongoing, One-Off

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

1. Diagnostic Imaging Data Set (DID)
2. Emergency Care Data Set (ECDS)
3. Hospital Episode Statistics Accident and Emergency (HES A and E)
4. Hospital Episode Statistics Admitted Patient Care (HES APC)
5. Hospital Episode Statistics Outpatients (HES OP)
6. Medicines dispensed in Primary Care (NHSBSA data)
7. NDRS Cancer Registrations
8. NDRS Linked Cancer Waiting Times (Treatments only)
9. NDRS National Cancer Patient Experience Survey (CPES)
10. NDRS National Radiotherapy Dataset (RTDS)
11. NDRS Rapid Cancer Registrations
12. NDRS Somatic Molecular Dataset
13. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
14. Civil Registrations of Death
15. Civil Registrations of Death - Secondary Care Cut
16. Demographics

Expected Benefits:

The findings of the audits are expected to contribute to evidence-based decision-making for policy-makers, and local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of healthcare users relevant to the subject matter of the study.

The role of a national clinical audit is to stimulate healthcare improvement through the provision of high-quality information on the organisation, delivery and outcomes of healthcare, together with tools and support to enable healthcare providers and other audiences to make best use of this information.

Improvements in care quality and outcomes are anticipated along with the reduction in unwarranted variation in treatments and outcomes between providers, and improvement in the equity of care across different demographic groups (age, gender, ethnicity), geography, level of deprivation and other population factors.

It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

Patients and Patient Charities have been engaged to ensure that the findings reach a wide audience to maximise the potential public benefits.

Outputs:

The expected outputs of the processing will be:
• ‘State of the Nation’ (SotN) reports for each individual Audit will be made publicly available. Publication will begin ~September 2024 and will occur annually from that point forward. The Audit teams will also produce a ‘lay-friendly’ version of the SotN report each year.
• Where appropriate, outputs of the audits that reflect key findings or methodological developments will be submitted to peer-reviewed journals.
• Presentations at appropriate conferences
• Publication of dashboards on the NATCAN website from early 2024 onwards

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

The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Social media
• Public reports
• Industry newsletters
• Press/media engagement
• Reports aimed at Clinicians, Commissioners and Policy Makers
• Reports aimed at Patients and the General Public

Outputs will begin to be disseminated from early 2024, dissemination of outputs will continue until the end of RCSEng's contract with HQIP.

Processing:

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England will provide the relevant records from the above-listed datasets to RCSEng CEU. The Data will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

Once in receipt of the data the RCSEng will not transfer it to any other locations. The Data will be stored on servers at the RCSEng.

The Data will be accessed by authorised personnel via remote access. The Data will remain on the servers at RCSEng at all times.

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

Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.
All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)).

The Data will not leave or be accessed outside of England at any time.

The master NATCAN dataset will only be accessed by a small number of individuals within the CEU
• Data Managers at the CEU- to create extracts for each individual audit and to perform data quality checks
• IT Colleagues- to supply support to the system
• The NATCAN Director of Operations- to ensure that internal governance processes are being followed and to manage compliance with this Data Sharing Agreement
• The CEU Director- to ensure that internal governance processes are being followed and to manage compliance with this Data Sharing Agreement

The data managers will produce subsets of the Data that will be accessed by the teams associated with each individual audit.

Access to any data disseminated under this Agreement is restricted to 1) substantive employees of the RCSEng or 2) substantive employees of London School of Hygiene and Tropical Medicine who have an honorary contract with RCSEng (N.B The CEU is collaboration between LSTHM and RCSEng).

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

The Data will not be linked with any other data outside the scope of this Agreement.

There will be no requirement and no attempt to reidentify individuals when using the Data.

Analysts based at the RCSEng CEU will analyse the Data for the purposes described above.

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National Vascular Registry - patient level HES and Civil Registration/Mortality data request — DARS-NIC-59669-F6Y3W

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, Anonymised - ICO Code Compliant, Yes, No (Mixture of confidential data flow(s) with consent and flow(s) with support under section 251 NHS Act 2006)

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 - s261(5)(d)

Purposes: No (Academic)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2020-05-21 — 2023-05-20 2020.12 — 2024.08.

Access method: One-Off, Ongoing

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE)

Sublicensing allowed: No

Datasets:

1. HES:Civil Registration (Deaths) bridge
2. Civil Registration - Deaths
3. Hospital Episode Statistics Admitted Patient Care
4. Civil Registration (Deaths) - Secondary Care Cut
5. HES-ID to MPS-ID HES Admitted Patient Care
6. Civil Registrations of Death - Secondary Care Cut
7. Hospital Episode Statistics Admitted Patient Care (HES APC)

Objectives:

Various types of vascular surgery are delivered in the NHS for arterial disease. The surgery is associated with significant morbidity and mortality, with some procedures having a postoperative 30-day mortality rate exceeding 30%.

The aim of the National Vascular Registry (NVR) is to improve the quality of care of patients having vascular surgery by providing high quality comparative information on clinical practice and outcomes and support quality improvement by NHS hospitals. The Registry was established in 2013 and collects data from NHS Trusts providing vascular surgery, in order to provide information on patient characteristics, pre-operative care, the range of surgery undertaken, and postoperative outcomes. Specific objectives of the NVR are:

1. To enable secondary care providers to improve the delivery of care to patients undergoing vascular surgery
2. To provide comparative information on the process of care to NHS vascular units
3. To provide comparative information on patient outcomes following surgery.
4. To facilitate the development of effective change (quality improvement) initiatives and spread examples of best practice among NHS vascular services.

This agreement has Joint Data Controllership - consisting of the Healthcare Quality Improvement Partnership (HQIP) and NHS England.

The Royal College of Surgeons (RCS) of England is commissioned by the Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England as part of the Clinical Audit and Patient Outcomes Programme (NCAPOP).

HQIP have commissioned the Royal College of Surgeons to deliver the audit, working in partnership with the Vascular Society for Great Britain and Ireland and the British Society of Interventional Radiologists.

The National Vascular Registry (NVR) is run by the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons.

Some members of the NVR team are substantively employed by London School of Hygiene & Tropical Medicine, but hold honorary contracts with RCS.

Northgate Public Services host the NVR IT system which is managed by the RCS. Northgate will be sending in the patient identifiers to NHS Digital they will not receive any data back from NHS Digital.

The National Clinical Audit and Patient Outcomes Programme (NCAPOP) is a large programme of circa 35 projects consisting of National Clinical Audits. HQIP is commissioned by NHS England to commission and manage the NCAPOP. NHS England is a controller of the NCAPOP jointly with HQIP as together both organisations determine the purposes and means of processing.

NHS England is responsible for determining which projects/topics are included as part of the NCAPOP. HQIP, as commissioner of the NCAPOP, is responsible for project specification development, procurement and extension activities, contract management and authorising data sharing requests. NHS England, as a funder of the NCAPOP, participates within specification development, procurement and project extension activities and authorises the publication of project outputs.

NHS England is involved with developing the scope and purpose of the NCAPOP projects through participation within specification development activities and may authorise (as chair of the specification development meetings) the final project specifications. These specifications set out the purpose of the project, the patient groups and clinical services to evaluate and the types of data to collect. NHS England are a representative upon the HQIP Data access request group which authorises data sharing applications from third parties.

As part of NCAPOP The NVR HQIP have commissioned the Royal College of Surgeons (RCS) to deliver the audit, working in partnership with the Vascular Society for Great Britain and Ireland and the British Society of Interventional Radiologists. The National Vascular Registry is run by the Clinical Effectiveness Unit of the Royal College of Surgeons. Some members of the NVR team are substantively employed by London School of Hygiene & Tropical Medicine, but hold honorary contracts with RCS. There are no other organisations involved.

Legal Basis Justification:
HQIP and NHS England both rely on the Article 6 (1) (e) legal basis under GDPR - "processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller". This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.

HQIP rely on Article 9 (2) (i) as the legal basis for processing under GDPR - "processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy". This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.

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

HQIP and NHS England act as data controllers for the national clinical audit but do not have access to any data collected or analysed by the staff in the Clinical Effectiveness Unit at the RCS who are the data processors.

The National Vascular Registry is based on prospectively collected, patient-level data on patients who have had vascular surgery. The analysis undertaken by the NVR project team will only involve pseudonymised (with exception to full Date of Death and Cause of Death) datasets that combine information submitted by NHS hospitals and data supplied by NHS Digital. The data are processed and stored at the RCS.

The NVR runs using a mixed patient consent model.

For patients having an elective procedure in England and Wales, patients are asked to consent for a number of personal identifiers to be submitted to the NVR by hospital staff - the identifiers are: NHS number, date of birth and full postcode.

For patients having surgery after an emergency admission in England and Wales, the NVR has Section 251 approval to collect these patient identifiers without consent because it is not typically feasible to ask for consent in these circumstances.

The RCS wish to link the patient records submitted to NVR with their Hospital Episode Statistics (HES) records. The NVR records relate only to an individual admission, and by linking to inpatient HES data, the Audit team will be able to provide more precise and relevant information to NHS hospitals by allowing the NVR to describe longer-term outcomes (e.g. readmission rates) and to improve risk-adjustment models by using the extensive information on comorbid conditions held within HES (eg, to calculate the Charlson Comorbidity score).

The RCS also wish to link the patient records submitted to NVR with Civil Registration/Mortality data on an annual basis to enable the Audit to monitor changes in postoperative outcomes (both short and longer-term mortality) for those patients. Access to this linked information will support this national clinical audit to improve the quality of care within NHS hospitals for a high-risk patient group.

The NVR began in 2013 and the historic data requested will provide important information when looking to improve key outcome measures such as mortality and length of stay.
HQIP require the HES/Civil Registration/Mortality data for the whole of England in order to meet the aims of the NVR. Data for only specific hospitals or regions would not provide a full picture of what is occurring across the country. There are no alternative, less intrusive ways of achieving the aims of the NVR.

The request is limited to patients undergoing vascular procedures in England.

In summary, the purpose of this request is to support national clinical audit, quality improvement within NHS hospitals, and undertake research to enhance the methods used to monitor surgical outcomes.

The audit cohort will for future data dissemination be looked at in line with the review of the impact of adverse events in respect of COVID-19. The findings of the work will benefit clinicians and patients allowing them to better manage the reorganisation of their services and provide better counselling for the risks faced by patients during COVID-19. Data disseminated under this agreement however will not allow the audit to look at the impact of COVID - 19 due to the data years being requested

Expected Benefits:

The National Vascular Registry plays a fundamental role in supporting vascular services to provide high-quality care to patients. The NVR produces various indicators that describe the standard of care in a different clinical areas, and these indicators help identify NHS providers that are performing well and those that need to improve the quality of care received by patients. NVR publications are widely disseminated amongst health professionals and other stakeholders including patients and the public.

Linkage of NVR data to the HES/Civil Registration/Mortality datasets will allow the Audit to produce more extensive information on patterns of care beyond the initial hospital admission and longer-term outcomes, such as 90-day mortality. The NVR will be able to examine issues such as readmission rates and the most common reasons for these post-discharge complications, e.g.: stroke or limb ischaemia.
Ongoing improvement in the processes of care and clinical outcomes should lead to a reduction in the postoperative mortality rates and thus better patient outcomes. Outcomes will be measured by re-auditing individual sites and therefore regular data linkage would be required. It is hoped that this improvement in care would be identified by the end of the currently proposed commissioned audit period (Dec 2020).
The main audiences for the audit annual reports are clinicians, healthcare professionals, Medical Directors, Chief Executives, audit managers, commissioners, NHS England, public and patients. NHS trusts will use the process indicators and outcomes reported in the annual reports to assess their care against national standards and benchmark against other NHS trusts. This will enable providers to identify areas requiring improvement and take action which in turn will provide a benefit to patient care.
Reporting will identify whether NHS trusts are meeting national guidance such as NICE recommendations and will identify variations in the provision of care.
The benchmarking of surgical outcomes such as postoperative mortality plays an important role in ensuring vascular procedures are delivered safely. Any NHS vascular unit that is flagged as having unexpectedly high postoperative mortality rates will be notified. This will allow an investigation into the potential causes, and either review the data submitted to the NVR or their clinical practice. Any resulting improvements in clinical practice will directly impact on the quality of patient care.
The trust level results are publicly available, providing transparency and enabling patient choice.
Publishing in peer-reviewed journals will allow greater discussion of the strengths and weaknesses of the results, and will provide the benefit of peer-review of the work from third parties.
It is anticipated that the reports produced as a result of the audit will contribute to clinical guidance and national policy.

Benefits derived from the activities of the NVR so far:
- Organisational information being used by CQC in their inspection reports)
- Organisational and consultant level outcome information published for patients and the public on the MyNHS website
- Important findings and recommendations for local services within the Annual reports, including (from the last report) highlighting:
1. the need for NHS trusts to meet the NICE recommendation that carotid endarterectomy is undertaken within 14 days of a patient experiencing symptoms.
2. that vascular units should aim to keep the time patients taken from referral for vascular assessment to elective AAA repair below the 8 week threshold set by the NHS AAA screening programme.
3. the need for NHS vascular units to ensure access to endovascular repair for emergency repair of ruptured aortic aneurysms.
4. that vascular units should examine how to improve their performance against the NCEPOD recommendations for amputation
The NVR has published Audit Reports in 2014, 2015, 2016, 2017, 2018; presented results at the Vascular Society and BSIR conferences; published articles in BJS, Circulation and EJVES. The HES data will allow The RCS to improve the risk models for producing risk-adjusted outcomes as more comorbidities would be included that are not collected in the NVR data.

Whilst the NVR has good case ascertainment rates for some of the procedures (above 90%), that still leaves 10% of patients not known about. Other procedures on the NVR have a case ascertainment rate of 50%-60%. Therefore the HES data will allow the RCS to calculate a lot of the outcome metrics on a more complete cohort of patients in England than currently can by just using the NVR data.

The study is not in support of a PhD/post graduate research study.

Outputs:

The linked dataset will be a product of this process and will enhance the quality of the comparative information produced by the NVR in subsequent years.

The NVR is commissioned to produce a "State of the Nation" annual report each year. These reports are typically published in November each year and are publicly available to view on the Vascular Services Quality Improvement Programme (VSQIP) website. Subsequent reports are scheduled to be published yearly. The reports contain information on patient characteristics, the types of surgery undertaken, and postoperative outcomes. Information about the quality of the NVR process is also presented, notably estimates of case-ascertainment. In this process, the HES records will provide a reference against which the number of patient records submitted to the NVR can be compared.

The NVR produces information at the level of an NHS organisation primarily. This information is used by NHS staff, other national bodies such as the Care Quality Commission and NHS Improvement. Information on consultant surgical outcomes is also produced for publication on MyNHS.

In order to disseminate the findings of the audit to the various stakeholders, various scientific publications will be produced. These outputs will be in the form of peer-review articles and conference presentations.

The results of the audit will also be disseminated at professional medical conferences and in peer-reviewed journals e.g. BJS (British Journal of Surgery), and EJVES (European Journal of Vascular and Endovascular Surgery) at the time of the launch of the report or shortly after. Publications related to the Audit methods (e.g., a risk adjustment model) rather than information of clinical practice and outcomes will be published on an ad hoc basis.

The main benefit of this data for patients is that this will allow The RCS to provide longer term outcomes for the patients entered on the NVR. The datasets currently held only cover in-hospital and 30 day deaths. Some of the procedures (e.g. elective infra-renal AAAs and lower limb angioplasties) have a very low mortality rate at 30 days (<2%), but it is known that the long term outcomes for these patients is not as good.

All outputs and publications will contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide.

As stated above, there will be no requirement nor attempt to re-identify individuals from the data.

Online reporting tables and graphs are available to NHS staff who have access to the NVR data collection system; these online tools are designed to assist NHS trusts and consultants benchmark themselves and promote local Quality Improvement work. The online reports will provide local units with aggregated information to compare their performance against a national average. Each individual user has their own login (username/password) to the NVR data collection system which gives them access to only their own hospital local data. No data supplied from NHS Digital is held or accessed here.

Information and outputs for the public can be accessed via https://www.vsqip.org.uk/public/

Processing:

The RCS are the principal data processors for the NVR and manage the extraction of the records from the NVR IT system, which is run by Northgate Public Services.

Northgate will send the file of patient identifiers (NHS Number, date of birth, gender and postcode) and the NVR Patient ID to NHS Digital for linkage to HES and Civil Registration/Mortality data records. The pseudonymised files returned to the RCS (which will include full date of death and Cause of Death (text)) from NHS Digital will contain the HES and Civil Registration/Mortality data fields with the NVR Patient ID variable added. These files will not contain the patient identifiers (NHS number, etc). The pseudonymised files of HES / Civil Registration/Mortality data will be received by the RCS and held on the secure data server within the RCS.

In all cases, the data received from NHS Digital will NOT be linked back to the identifiable patient database held within the NVR data collection system. An extract of pseudonymised data will be taken from the NVR data collection system and this data will be linked to the HES-Civil Registration/Mortality data files using the NVR Patient ID. Date of Death from the NVR database is provided as this allows the agreement between the various dates to be assessed (an important data quality step). There are potential missed linkages if the RCS do not have this information when processing the data. CEU staff that analyse the linked NVR / HES/ Civil Registration/Mortality data dataset will not have access to the identifiable data held within the NVR data collection system and will not have access to the list of patient identifiers sent to NHS digital for linkage purposes. The CEU are carrying out data processing activities on behalf of the Data Controllers HQIP and NHS England.

A copy of the de-identified data fields along with the unique NVR Patient ID will be stored on the RCS secure server, with access controlled by the CEU Director who has overall responsibility for the NVR. The analysis involving the de-identified linked patient dataset will be conducted by the CEU analysts who are part of the NVR project team, including 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 substantively employed by RCS or by individuals substantively employed by LSHTM who have honorary contracts of employment with RCS.

The full Date of Death is required to be able to calculate survival at multiple time points (30 day, 90 day, etc.).

No individual-level HES or Civil Registration/Mortality data will be transferred outside of the RCS or shared with other organisations. The RCS will not be linking HES/Civil Registration/Mortality data with any other dataset apart from an extract of NVR data. Linkage with any other datasets would be subject to a future application if required and would be supported by an appropriate legal basis.

The NVR are also requesting unlinked patient level HES data for all vascular procedures in 2011-2018 to calculate case ascertainment rates within the NVR. The relevant OPCS (Office of Population, Censuses and Surveys Classification of Surgical Operations and Procedures) codes are L16-L79 (Aortic repair, carotid endarterectomy, lower-limb revascularisation) and X09, X10, X11 – Lower limb amputation.

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 data will be processed in line with the NHS Digital HES analyses guide.

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National Lung Cancer Audit - NCRAS data request — DARS-NIC-663539-G7F9X

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, Yes, No (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 - s261(5)(d), Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2022-09-27 — 2023-09-26 2022.11 — 2024.04.

Access method: One-Off, Ongoing

Data-controller type: HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND (QUARRY HOUSE), HEALTHCARE QUALITY IMPROVEMENT PARTNERSHIP (HQIP), NHS ENGLAND - X26

Sublicensing allowed: No

Datasets:

1. NDRS Cancer Registry
2. NDRS Linked HES APC
3. NDRS National Radiotherapy Dataset (RTDS)
4. NDRS Rapid Cancer Registrations
5. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
6. NDRS Cancer Registrations

Yielded Benefits:

NHS England and HQIP have commissioned the NLCA since 2004. Data for this study has previously been shared when the data was controlled and managed by Public Health England (PHE). As such there are some yielded benefits to be observed from the access to the data for the study prior to NHS Digital becoming data controller. Results of the findings and recommendations that the Audit has published in its annual reports, care providers have been able to implement changes and improvement work that have ultimately benefitted the provision of health and social care in England. The key benefits and yielded benefits outlined in the Audits 2022 report are as follows: - For patients diagnosed with lung cancer in 2019, 1-year survival improved compared with 2018. This improvement may be linked to the recommendations and changes suggested in the 2021 Audit. - In 2019 in England, curative treatment rates of NSCLC patients with stage I/II and good performance status from the RCRD were 81%, as a result, the Audit recommended that trusts with lower than expected performance in this area use a toolkit (published with the Audits 2021 report) to review their processes for selection of patients for such treatment. Since this recommendation has been made this metric fell significantly to 73% in 2020 with a drop in surgical resection rate from 20% to 15%. - Compared with 2019, lung cancer patients diagnosed in England in 2020 had worse performance status, were more likely to be diagnosed via emergency presentation and less likely to have a pathological diagnosis. The identification of reduction in performance has resulted in the Audit making several recommendations that would support an earlier diagnosis.

Expected Benefits:

This dissemination is anticipated to allow the Audit to provide information to NHS Lung Cancer Services which they can benchmark their performance against, and identify areas where quality improvement is required. Therefore, this dissemination has the potential to benefit the provision of health and social care in England.

By auditing the care delivered by cancer services, the NLCA can highlight areas where NHS hospitals are doing well and areas in which the quality of care can be improved. The results of the NLCA have the potential to encourage providers to review and act on their results to improve the clinical care delivered to patients, this will be done by sharing comparative performance information to allow local benchmarking; and highlighting areas of unexplained variation in practice and/or outcomes. The audit will look to identify best practices and make recommendations on how lung cancer teams, policymakers and health care commissioners can address issues identified by the NLCA related to the management of lung cancer care.

If the performance of a provider falls outside a pre-specified range it will be flagged as a potential “outlier”. The Clinical Lead will be notified of their outlier status and the trust will be mandated to investigate the possible causes and to develop an action plan.

In cases where outlier status is confirmed, and clinical practice is identified as contributing to poorer outcomes, the development and implementation of action plans by the NHS trust to improve practice can have a direct impact on patient care.

The NLCA will contribute to improving the understanding of the determinants of variation in the treatment and outcomes of patients, and this will lead to more accurate, more appropriately risk-adjusted indicators to inform quality improvement.

The outputs produced as a result of this Audit will provide lung cancer patients with the resources to make an informed decision about their care following a lung cancer diagnosis.

The publication of comparative local outcomes, along with the associated commentary, will allow patients, carers and the public to understand the quality of care being offered and enable them to ask NHS trusts and clinical teams how they plan to put right any deficiencies identified via the audit.

Outputs:

The outputs produced by the NLCA are the deliverables in the audit contract with HQIP.

Any data contained within the outputs referenced within this section will be aggregated with small numbers suppressed unless otherwise specified.

The results produced by the NLCA team are published in annual ‘State of the Nation’ (SotN) reports, quarterly dashboards and other documents such as peer-reviewed publications. Results will also be presented at appropriate medical conferences. The intended audience for these outputs is patients and people who deliver, receive, commission and regulate lung cancer care.

The annual SotN reports will highlight where local services should focus on quality improvement activities. In parallel with the publication of the SotN report, provider-level and regional-level results will be published on the publicly available NLCA website which provides transparency and supports patient choice. The results will be published alongside quality improvement tools and resources, and NHS trusts will use this information to assess their care against national standards, clinical guidance and the performance of other trusts.

NHS trust-level indicators (as well as national and regional results) will be reported in a dashboard on the NLCA website. These dashboard results will be refreshed on a quarterly basis and will enable continuous monitoring of NHS providers, essential for supporting local quality improvement. The NLCA website will include the facility to download activity summaries and outcomes as short PDF documents and presentations.

Publications in peer-reviewed journals will broaden the dissemination of the NLCA findings and allow the presentation of the audit results and methodology in more detail than in the SotN reports. In any such reports, the NLCA will use appropriate methods to measure a range of key process and outcome performance indicators, comparing and reporting the performance of NHS providers. The Audit aims to publish in peer-reviewed journals within the next three years.

The results from the SotN report will be presented at annual meetings of the British Thoracic Oncology Group (BTOG; scheduled for January 2023) and the Society for Thoracic Surgery (January 2023) as a minimum. The NLCA team will aim to disseminate their results and reports widely with the support of their stakeholders, including patient charities and professional organisations to ensure maximum engagement with scientific and policy-making communities.

The NLCA will support other key national initiatives including the CQC’s inspection programme, HQIP’s National Clinical Audit Benchmarking (NCAB), the Getting it right first time initiative (GIRFT) and Model Hospital by providing provider-level results.

To ensure that the Audit findings reach interested groups and civil society, the Audit will publish Newsletters (https://www.lungcanceraudit.org.uk/news/categories/enewsletters/) and social media messages to announce the publication of reports. The reports are written in plain language and use infographics to display key findings to make them accessible to lay readers.

The NLCA will also produce lay versions of the NLCA SotN reports for patients and the public, which will be available on the NLCA website. Patient representatives in the NLCA Patient Forum will guide the development of NLCA outputs. Members of the NLCA Patient Forum will also guide the development of the patient summaries and accompanying materials designed for patients including infographics, information leaflets and slide sets for patient support groups to ensure the findings, key messages and recommendations are accessible to a lay audience.

Processing:

There is no flow of identifiers into NHS Digital to support this request, the cohort is generated using a selection of ICD-10 codes referenced in ‘Objective for Processing’.

NHS Digital provide the RCSEng CEU with pseudonymised subsets of the following datasets on annual basis :
• National Cancer Registry Dataset (NCDR)
• National Radiotherapy Dataset (RTDS)
• Systemic Anti-Cancer Therapy Dataset (SACT)
• HES APC

This is in addition to pseudonymised subsets of the following on a quarterly basis.
• Rapid Cancer Registration Dataset (RCRD) linked to HES, RTDS and SACT.

The National Cancer Registration and Analysis Service (NCRAS) will assign a unique pseudo-identifier to each patient in the NLCA cohort. This pseudo-identifier will be utilised by NCRAS to link to the data.

Once the pseudonymised data is received by the RCSEng there will be no further flows of data. This DSA does not permit the data controllers to share data with any third parties, any further dissemination would be subject to a separate DSA, with appropriate REC support (if required).

The data received from NHS Digital will not be linked to any further datasets that are not referenced within this Agreement. There is no requirement to re-identify individuals from the pseudonymised data.

Upon receipt of the requested data, the CEU will analyse the data to produce statistical tables for inclusion in the outputs specified in the ‘Expected Outputs’ section of this Agreement and derive quality indicators to benchmark performance.

The NLCA will adopt an appropriate risk-adjustment strategy to ensure that the outcome and performance indicators related to NHS providers and regions can be compared reliably. The strategy will be specific to each indicator, the context and the characteristics of the patient groups. The risk adjustment models will include various types of variables, such as patient characteristics (e.g. age, sex), disease factors (e.g. stage, tumour site) and medical history (e.g. comorbidities).

All data will be processed by substantive employees of the RCSEng, or by substantive employees of LSHTM (academic collaborators of the CEU) working under honorary contracts with the RCSEng. All individuals processing the data will receive the appropriate training in data protection and confidentiality. The RCSEng is responsible for ensuring that the appropriate contractual controls are in place to ensure the lawful processing of any data disseminated under this Agreement and that any contract with an employee of LSHTM is GDPR compliant and enforces appropriate disciplinary procedures.

At the RCS, the Audit data will be stored in a secure IT environment and access to the data is only available for approved individuals and security is maintained using passwords and encryption. The audit uses role-based access to the data, which means that only staff involved in the audit work can be granted access to the strictly necessary information.

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Bespoke Data Linkage - renewal — DARS-NIC-15335-H0D1F

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, No - data flow is not identifiable, Anonymised - ICO Code Compliant, Identifiable, Yes, No (Section 251, Section 251 NHS Act 2006)

Legal basis: 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), Health and Social Care Act 2012, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii); Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii); Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(2)(a), Health and Social Care Act 2012 - s261(5)(d); Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2018-07-24 — 2021-07-23 2018.03 — 2020.10.

Access method: One-Off, Ongoing

Data-controller type: THE ROYAL COLLEGE OF SURGEONS OF ENGLAND

Sublicensing allowed: No

Datasets:

1. Hospital Episode Statistics Admitted Patient Care
2. Hospital Episode Statistics Accident and Emergency
3. Hospital Episode Statistics Outpatients
4. Office for National Statistics Mortality Data
5. Bridge file: Hospital Episode Statistics to Mortality Data from the Office of National Statistics
6. HES:Civil Registration (Deaths) bridge
7. Civil Registration - Deaths
8. Office for National Statistics Mortality Data (linkable to HES)
9. Civil Registration (Deaths) - Secondary Care Cut
10. Civil Registrations of Death - Secondary Care Cut
11. Hospital Episode Statistics Accident and Emergency (HES A and E)
12. Hospital Episode Statistics Admitted Patient Care (HES APC)
13. Hospital Episode Statistics Outpatients (HES OP)

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 2002/03-2016/17, HES OP 2011/12-2016/17 and ONS mortality 2002-2017. The data will be filtered with the following inclusion criteria: Patients with a diagnosis of cancer of the colon or rectum.

• Project Two - National Oesophago-gastric Cancer Audit
This project will use the following data: pseudonymised HES APC 2002/03-2016/17 and ONS mortality 2002-2017. The data will be filtered with the following inclusion criteria: Patients with 1) an oesophageal cancer or stomach cancer diagnosis or 2) an excision of the oesophogus or stomach procedure.

• Project Three - National Prostate Cancer Audit;
This project will use the following data: pseudonymised HES APC 2008/09-2016/17 and ONS mortality 2008-2017. The data will be filtered with the following inclusion criteria: Patients with 1) a prostate cancer diagnosis or 2) a prostatectomy operation or other prostate procedure, including brachytherapy, HIFU, cryotherapy.

• Project Four - National Vascular Registry;
This project will use the following data: pseudonymised HES APC 2002/03-2016/17, HES OP 2011/12-2016/17 and ONS mortality 2002-2017. The data will be filtered with the following inclusion criteria: Patients with 1) a diagnosis of stroke, aortic aneurysms, peripheral arterial disease or 2) a procedure of aortic repair, carotid endarterectomy, lowerlimb revascularisation or lower limb amputation.

• Project Five - National Audit of Breast Cancer in Older People;
This project will use the following data: pseudonymised HES APC 2002/03-2016/17 , HES OP 2011/12-2016/17 and ONS mortality 2002-2017. The data will be filtered with the following inclusion criteria: Patients with 1) a breast cancer diagnosis or 2) a breast excision or reconstruction operation.

• Project Six - National Emergency Laparotomy Audit
This project will use the following data: pseudonymised HES APC 2002/03-2016/17 and ONS mortality 2002-2017. The data will be filtered with the following inclusion criteria: 1. all patients over 18 years and 2. who were admitted as an emergency and 3. who have one or more of the specified OPCS procedure codes in any of the operation fields.

• Project Eight - the Cleft Registry and Audit Network (CRANE) project.
This project will use only the following data: identifiable HES APC (maternity data) 2002/03-2016/17. The use of ONS mortality data is not permitted for this project. The data will be filtered with the following inclusion criteria: Patients with 1) a diagnosis of cleft lip and or palate or 2) a cleft repair procedure.


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 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 2002/03-2016/17 . The use of ONS mortality data is not required or permitted for this project. The data will be filtered with the following inclusion criteria: 1. Patients with a diagnosis of atrial fibrillation or 2. a specified procedure on the heart or pericardium.

• 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 2006/07-2016/17 ; HES OP 2011/12-2016/17; HES A&E 2011/12-2016/17. The use of ONS mortality data is not required or permitted for this project. The data will be filtered with the following inclusion criteria: Female patients aged >11 with 1) a diagnosis relating to obstetric care or a benign gynaecological condition. Also patients with a gynaecological cancer diagnosis for exclusion purposes or 2) procedures relating to bladder, vagina, uterus. (NB: Same extract as for project 13).

• 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) 2002/03-2016/17. The use of ONS mortality data is not required or permitted for this project. The data will be filtered with the following inclusion criteria: 1) Identify all delivery episodes (mother); 2) Identify all birth episodes (baby).

• 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) 2006/07-2016/17. The use of ONS mortality data is not required or permitted for this project. The data will be filtered with the following inclusion criteria: Female patients aged >11 with 1) a diagnosis relating to obstetric care or a benign gynaecological condition. Also patients with a gynaecological cancer diagnosis for exclusion purposes or 2) procedures relating to bladder, vagina, uterus. (NB: Same extract as for project 11).

• 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 2009/10-2016/17. The use of ONS mortality data is not required or permitted for this project. The data will be filtered with the following inclusion criteria: Patients aged >=18 with 1) a primary diagnosis of heart failure, MI or other cardiac disease, or 2) any diagnosis of pneumothorax or pyothorax, or 3) valve procedures, bypass procedures, PCTA, pleural procedures.


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.

Because of the broad programme of work, there is limited opportunity for data minimisation and that the projects require the CEU to hold full-years of HES inpatient data that extend over a period of 15 years. The various reasons for this are as follows:
First, the programme of clinical audit and service evaluation undertaken within the CEU examines the hospital care received by adults and children within all of England. Projects are never restricted to a smaller geographical area. Moreover, an important aspect of many studies is to examine how patterns of service delivery change over extended periods of time (for example, to understand the impact of the centralisation of surgical services).

Second, CEU projects (1) investigate differences in the care trajectory of patients as they move across NHS providers over time, and (2) assess the degree to which care varies across providers and geographical regions (NB: in some projects, ONS death register data plays a key role in doing this accurately - the HES data will describe the trajectory of care, while ONS date of death is required to determine that the trajectory has ended). For example, in the project examining patterns of cardiac surgery, many patients first present with symptoms to a district hospital before being transferred to a specialist cardiac centre. More generally, an outcome indicator used in various projects relates to unplanned readmission after surgery (e.g. within 30-days, 1-year). These readmissions can occur in any NHS hospital and may not be within the one to which the patient was first admitted.

Third, while an extract of all episodes relating to a specific surgical procedure (lower-limb amputation) or diagnosis (peripheral artery disease) will lie within specified timeframe, it is typically necessary to examine the previous admissions of these patients for various reasons:

i. outcomes of care are linked to the general health of the patient as well as the condition under examination. Consequently, it is necessary to use data extracts from previous years to derive the number and type of chronic conditions that a patient may be suffering because these may not be entered in the secondary diagnosis fields of the index admission. Moreover, for some conditions (like myocardial infarction), it is necessary to rely on historical records because it is not clear from the index record if the condition occurred in the past or is one of the reasons for the index admission.

ii. when analysing the patterns of care and outcomes among a particular group of patients, it is necessary to define an index event (such as the date of cancer diagnosis) from which the patient becomes eligible to be included in the study. For many conditions, the only way to do this is to look at previous years of HES data to ensure a person has not experienced that event before. For example, a practical way defining the index lower limb bypass operation for patients with peripheral artery disease is by ensuring the person has not had this procedure in the previous 5 years.

iii. This look-back technique is also necessary in studies to determine values that are missing or not collected within HES fields. For example, in studies of maternity care, it is important to know the number of previous deliveries (parity) and whether or not any previous baby was delivered by caesarean section. Although hospitals can record the number of previous deliveries in the maternity tail, it is missing or inaccurate in a sizeable number of cases. Because women’s child-bearing years extend from teenage to middle-age, an evaluation of the accuracy of different look-back periods suggests a look-back period of at least 7 years is the minimum required to produce reliable estimates of parity.

Fourth, projects can focus on events that occur many years after the index admission or surgical procedure (.i.e, the first instance of care given to a patient). For example, a study that described the outcomes among women who had mastectomy for breast cancer looked at admissions up to four years after the mastectomy in order to capture all cases of breast reconstruction among this cohort of women. Other examples of long-term outcomes are: (a) the proportion of patients having lower limb amputation after a lower limb artery bypass procedure for people suffering from peripheral artery disease, (b) the proportion of women who have hysterectomy after the less invasive endometrial ablation for women suffering from uterine fibroids, or (c) the proportion of patients receiving treatment for cancer progression or recurrence.

Finally, to answer a specific question, the data extract used by a project may need to include patient groups that fall outside the primary 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 endarterectomy but did not receive one, or newborn babies who are born with an oral cleft but did not undergo major cleft lip and palate repair).

While the size of the extracts used by each project is minimised, having a single large dataset based on complete HES years does not expand the total number of patients on which data are held compared to the total number of records within the individual extracts required by the various projects. In addition, this approach 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; and.

Only the two CEU data managers have access to the complete HES database. The data managers produce an extract meeting the eligibility criteria specific to each individual project and then save it into a project-specific folder. 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.

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.

Yielded Benefits:

Purpose 1: In the last year, the national clinical audits produced “state of the nation” reports that provided comparative information on clinical practice and outcomes for benchmarking and recommendations on areas that of care that could be improved. The results of the most recent audit period for each of the national clinical audits were published in 2017/18, as planned: 1. Bowel Cancer – in December 2017 2. OG Cancer - December 2017 3. Prostate Cancer – in December 2017 4. NVR in November 2017 5. Breast cancer in July 2017 6. NELA in October 2017 8. Crane December 2017 [Summary of OGC impact] The report recommendations highlighted specific areas in the care pathway for improvement, and where appropriate, letters were sent to medical directors requesting immediate action. The report findings were used by the CQC in their inspection visits and have been incorporated in the HQIPs National Clinical Audit Benchmarking initiative (https://ncab.hqip.org.uk/) in the cases of projects 1-4. Benefits from each audit have also been produced for the patients and the public, through the production of tailored material such as patient reports and infographics that communicate key messages about performance within the NHS. In particular, the audits on bowel cancer, oesophago-gastric cancer and vascular surgery have also published information on surgical outcomes by individual surgeon on the NHS Choices / MyNHS websites, which inform patients about the performance of their local services. There have also been benefits for the medical community, patients, policy makers and stakeholders with the publication of papers in peer-review journals. Two examples below were generated by the National Vascular Registry: Heikkila K, Loftus IM, Mitchell DC, Johal AS, Waton S, Cromwell DA. Population-based study of mortality ad major amputation following lower limb revascularization. Br J Surg. 2018 Apr 25. doi: 10.1002/bjs.10823. Heikkila K, Mitchell DC, Loftus IM, Johal AS, Waton S, Cromwell DA. Improving 1-Year Outcomes of Infrainguinal Limb Revascularization: Population-Based Cohort Study of 104 000 Patients in England. Circulation. 2018; 137(18):1921-1933. doi: 10.1161/CIRCULATIONAHA.117.029834. These papers evaluated the outcomes after lower limb bypass since 2005, and clarified the risk of amputation that patient face. The work also demonstrated the improvement in outcomes for patients over the last 10 years. Purpose 2: Benefits from the projects related to our programme of service evaluation reflect the degree of maturity of the tasks being tackled. For project 10, presentation of the work on atrial fibrillation to stakeholders has supported work on improving the management of this condition locally. It has stimulated a focus on the wider problem of improving the management of multi-morbidity (ie, patients with two or more chronic conditions). There is an ongoing debate about the value of mesh to treat stress incontinence in women. The latest advice from NHS England has been for NHS hospitals to suspend the use of mesh for the treatment of urinary incontinence. Project 11 is directly contributing to the better understanding of this issue. Preliminary results have identified geographical variation in surgery for female stress urinary incontinence in England. A paper on the outcomes after surgery involving mesh is under-review. Within project 13, the initial work on maternity indicators provided women with unique information on the patterns of care delivered by NHS maternity units. The information was provided as a web-based resource and was visited 1000s of times. This work contributed to the commissioning of the National Maternity and Perinatal Audit, which has taken over this role of providing women with information on maternity care. Project 13 subsequently focused on delivering the same benefits for women having gynaecological treatments and will be publishing its first report later in 2018. Project 12 - Outcomes of delivery among preterm babies, including surgical care during infancy (Investigator-led, Wellcome Postdoctoral Fellowship). This project has not finished and the following was noted: The benefits of this project relate to the clearer advice available to hospital maternity staff on the management of late preterm babies. In particular, that maternity unit discharge policies for term babies may not be appropriate for those born a few weeks too early, and that increased in-hospital support may prevent avoidable readmissions for late preterm babies. Before this project, little was known about the whether the length of stay in hospital after birth is related to the subsequent risk of an unplanned readmission within 30 days for preterm babies. This analysis of HES data found that a longer length of stay (LOS) was associated with a reduced risk of readmission for late preterm (34–36 weeks’ gestation) , normal births. A peer-reviewed article describing this work was published in the journal Paediatric & Perinatal Epidemiology. Project 14 - Patterns and outcomes of thoracic surgery (Commissioned by the Society for Cardiothoracic Surgery). This project has now finished and the following was noted: The national clinical audits of cardiac surgery and thoracic surgery only provide information on clinical practice and patient outcomes for the hospital admission during which surgery is performed. This project explored the potential of using Hospital Episode Statistics (HES) data to expand the information available to patients and staff about adult cardiac and thoracic surgery in English NHS trusts. Benefits from the project stem from the results demonstrating additional information on clinical practice and outcomes can be generated from HES. Of particular value would be 30-day unplanned readmission rates, and rates of repeat surgery within one year of the initial procedure. Producing this type of information for all English cardiothoracic units would help the units with benchmarking and quality improvement, and inform patients about what outcomes to expect. A report describing these results was produced for the Society for Cardiothoracic Surgery, and informed discussions about the development of the national clinical audits involving these procedures.

Expected 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 2017
2. OGC – December 2017
3. Prostate – December 2017
4. NVR – November 2017
5. Breast cancer – July 2017
6. NELA – September 2017
8. Crane – December 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. 2017 Jan;54(1):80-89.
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.

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

Example from the study of outcomes of delivery among preterm babies (Project 12)
Harron K, Gilbert R, Cromwell D, Oddie S, van der Meulen J. Newborn Length of Stay and Risk of Readmission. Paediatr Perinat Epidemiol. 2017 May; 31(3):221-232.

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 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 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.

The applicant will not attempt to re-identify data and will not link to any other record level data.

ONS terms and conditions relating to the data being shared under this agreement will be adhered to.

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Project 5 — DARS-NIC-96472-W0K5S

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y

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

Purposes: ()

Sensitive: Non Sensitive

When:2017.09 — 2018.05.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

1. MRIS - List Cleaning Report

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.

Expected 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.

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The access to and outcomes of elective joint replacement surgery for patients with long-term conditions: a study using PROMs and administrative data — DARS-NIC-26815-F8H6B

Type of data: information not disclosed for TRE projects

Opt outs honoured: N, Y, Anonymised - ICO Code Compliant (Section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii)

Purposes: No (Academic)

Sensitive: Non Sensitive, and Sensitive, and Non-Sensitive

When:DSA runs 2019-03-01 — 2020-09-11 2017.03 — 2017.05.

Access method: One-Off

Data-controller type: THE ROYAL COLLEGE OF SURGEONS OF ENGLAND

Sublicensing allowed: No

Datasets:

1. Patient Reported Outcome Measures
2. Office for National Statistics Mortality Data (linkable to HES)
3. Hospital Episode Statistics Admitted Patient Care
4. Civil Registration (Deaths) - Secondary Care Cut
5. HES:Civil Registration (Deaths) bridge
6. Civil Registrations of Death - Secondary Care Cut
7. Hospital Episode Statistics Admitted Patient Care (HES APC)
8. Patient Reported Outcome Measures (PROMs)

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)

Yielded Benefits:

Pseudonymised HES, Civil Registration and PROMS data was supplied to The Royal College of Surgeons of England by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "The access to and outcomes of elective joint replacement surgery for patients with long-term conditions: a study using PROMs and administrative data " This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted. Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required. No further outputs of the data are permitted to be created under this version of the agreement. Outputs will only be permitted to be created once a new agreement that meets all of NHS Digital's legal, ethical and security requirements is in place. The following information provides background information on the benefits of the original dissemination. No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated. *********************************************************************************** The yielded benefits to date are the following: - Of the five planned papers, three have been published, two have been submitted, one has been drafted and two planned. Two of the published papers are preparatory work: A systematic review and a qualitative study that have informed the rest of the papers. - A PhD thesis has been completed and published online in January 2019 on the LSHTM online and the British Library. https://doi.org/10.17037/PUBS.04653866 - Presentations at two conferences in 2017, 2018 and 2019: Health Service Research UK and Advances in Patient Reported Outcomes Research. - Participation in the NICE scoping guidelines workshop for the updated guidelines on Hip, Knee and Shoulder joint replacement. The aim of the NICE scoping guidelines workshop was to decide on the topics that would be covered in the updated guideline. This study provided the evidence for the need for further guidance on clinical indication for hip and knee replacement surgery and generally on the clinical pathway to hip and knee replacement surgery from primary care to surgical consultation. Further guidance will ensure there is less variation in the access to care for patients in need of hip or knee replacement surgery.

Expected 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.

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Maternity - Birth Data Study HES Extract — DARS-NIC-383345-W2D3J

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y, Identifiable, Anonymised - ICO Code Compliant (Section 251 NHS Act 2006)

Legal basis: Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007 , Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(7)

Purposes: No (Academic)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2018-07-01 — 2021-06-30 2017.06 — 2017.02.

Access method: One-Off

Data-controller type: THE ROYAL COLLEGE OF SURGEONS OF ENGLAND

Sublicensing allowed: No

Datasets:

1. Office for National Statistics Mortality Data (linkable to HES)
2. Hospital Episode Statistics Accident and Emergency
3. Hospital Episode Statistics Admitted Patient Care
4. Hospital Episode Statistics Outpatients
5. Civil Registration (Deaths) - Secondary Care Cut
6. HES:Civil Registration (Deaths) bridge
7. Civil Registrations of Death - Secondary Care Cut
8. Hospital Episode Statistics Accident and Emergency (HES A and E)
9. Hospital Episode Statistics Admitted Patient Care (HES APC)
10. Hospital Episode Statistics Outpatients (HES OP)

Objectives:

Royal College of Surgeons (RCS) request patient-level Hospital Episode Statistics (HES) linked with ONS mortality data 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-ONS 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.

Yielded Benefits:

Expected 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.

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.

The ONS data will be processed in accordance with ONS standard terms and conditions as described in the special conditions of this document.

Linked ONS mortality data will be used to account for maternal and infant deaths within analyses; date of death will be transformed into days since birth/postnatal discharge and then destroyed. Taking into account timing of deaths is important when assessing trends in maternal and infant readmissions over time. Date of birth is required to calculate accurate post-natal length of stay and time to readmission.

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).

The data will not be linked to any other datasets.

RCS will not attempt, nor have any requirement, to re-identify any participants within the data.

RCS will not share the data with any 3rd parties, including the Royal College of Obstetricians and Gynaecologists or linked with the National Maternity Audit data.



RCS agree to the destruction of the date of birth and date of death data once the required calculations have been completed. Data destruction documents will be submitted to NHS Digital once completed.

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