NHS Digital Data Release Register - reformatted

Health & Social Care Information Centre projects

National Gastro Intestinal Cancer Audit Programme (GICAP)- National Bowel Cancer Audit (NBOCA)

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

National Gastro Intestinal Cancer Audit Programme (GICAP)- National Bowel Cancer Audit (NBOCA) — DARS-NIC-376603-K2J9R

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, Identifiable, Anonymised - ICO Code Compliant, Yes, No (Section 251, 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(7), National Health Service Act 2006 - s251 - 'Control of patient information'. , Health and Social Care Act 2012 s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 s261(7), Health and Social Care Act 2012 s261(2)(a)

Purposes: No (Agency/Public Body)

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

When:DSA runs 2021-05-07 — 2023-05-06 2018.06 — 2023.04.

Access method: One-Off, Ongoing

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

Sublicensing allowed: No

Datasets:

Hospital Episode Statistics Admitted Patient Care
MRIS - Cause of Death Report
MRIS - Flagging Current Status Report
Hospital Episode Statistics Accident and Emergency
Hospital Episode Statistics Outpatients
Civil Registration - Deaths
Demographics
Emergency Care Data Set (ECDS)
HES:Civil Registration (Deaths) bridge
HES-ID to MPS-ID HES Accident and Emergency
HES-ID to MPS-ID HES Admitted Patient Care
HES-ID to MPS-ID HES Outpatients
Civil Registrations of Death
Hospital Episode Statistics Accident and Emergency (HES A and E)
Hospital Episode Statistics Admitted Patient Care (HES APC)
Hospital Episode Statistics Outpatients (HES OP)
Civil Registrations of Death - Secondary Care Cut

Objectives:

Update March 2018 *******
The contract to run the bowel cancer audit as part of the Upper GI Cancer audit is still to be awarded by HQIP. This was expected to have taken place by the end of February 2018, giving 3 months notice to the end of the contract. As it has not yet happened there is the need to continue to hold, collect and process the data until it is known whether the RCS and NHS Digital will be awarded the contract to continue the audit or whether it will need to be arranged for transfer of the data to a new audit provider. The request to extend the deadline is to allow time for this contract situation to be resolved.

An additional request for 2017/18 HES APC data has been added, this was inadvertently missed off the previous application by the customer.

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The National Bowel Cancer Audit is based on prospectively-collected, patient-level data on patients diagnosed with colorectal cancer. This information is combined with other available datasets to provide a rich description of the care process and to minimise the burden of data collection on clinical staff.

The aim of the National Bowel Cancer Audit is to assess the quality of care received by patients with bowel cancer in England and Wales. Survival depends on early diagnosis through appropriate investigations, use of complicated surgical techniques and input from a range of professionals. The management of patients with this type of cancer is complex and requires multidisciplinary working. By collecting data from NHS Trusts providing care to bowel cancer patients the audit is able to provide outcomes on patient characteristics, treatment planning, postoperative outcomes and palliative treatment.

Bowel cancer is the third most common malignancy in the UK and affects approximately 33,000 people each year. Incidence is increasing and the prognosis for most patients diagnosed with bowel cancer remains poor.
HES data required for:
• Analysing patient follow up, such as emergency readmissions and stoma reversals.
• Audit-HES linked dataset used to investigate hospital utilisation and readmissions among patients with palliative treatment intent.
• Addressing the completion of chemotherapy among patients with palliative treatment intent.
• These outcomes are published in the Audit’s annual reports, which are used by trusts to assess whether they are meeting national guidance and benchmark their performance. If they are not then trusts will address and make improvements and this will then result in benefits to patients.

The National Bowel Cancer Audit is run by the Royal College of Surgeons (RCS) Clinical Effectiveness Unit (CEU) with data provision, management and publication provided by NHS Digital Clinical Audit and Registries Management Service (CARMS).

The request is also for HES data to be returned for patients who fit the inclusion criteria but are not included in Audit cohort.

The HES data with the Audit Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes. The Audit Tumour ID key is held by NHS Digital CARMS.

Access to HES allows the Audit to substantially reduce the number of items from the bowel cancer dataset by retrieving relevant information on follow up and outcomes from Hospital Episode Statistics (dataset reduced from 130 plus data items to 43 data items since the audit has been linking to HES).

Death Data required for:
Date of Death will be linked to the Audit data to provide short-term and long-term survival outcomes so we can publish short-term and long-term mortality outcomes which evidence that patient survival is improving.

Place of Death (with NHS indicator code) will be used in analysis of the palliative care pathway, particularly whether patients die at home, the usual residence (if not home), in the hospital, or in another institutional setting. This will allow the Audit to provide national and trust level outcomes on end of life care.

Place of death will be in the form of a code from ONS known as Communal Establishment Code and will remove the potential of the address being identifiable to the patient.

Cause of Death will be used in analysis of whether patients are dying from their cancer or other causes.

An on-going part of the audit process commissioned by HQIP is the Clinical Outcomes Programme. The information from the audit is used to measure the performance of trusts and surgeons on the following 4 measures
• 90 day emergency readmission after major resection;
• 18 month stoma rate after major resection for rectal cancer;
• 90 day mortality after major resection;
• 24 month mortality after major resection.

Outliers at individual surgeon level and at trust level are identified through the analysis undertaken by the RCS CEU. Notifications are sent out for response by the individual surgeons and/ or the trusts (as applicable) and their responses are included in the annual report. To assist the trusts in evaluating the reasons for their outlier status, record level data for the relevant trust will be provided back to the trust upon request to NHS Digital. Data files for these requests will be provided in a 256 bit encrypted zip file to a named individual via NHS.net; the password for the file will be sent to another named individual nominated by the trust, again using NHS.net.

Whilst the provision of data back to trusts as part of the Clinical Outcomes Programme is not new, the ability to provide fact of death in relation to the 2 mortality indicators is a new element, which is supported by the CAG amendment approval letter.

Systemic Anti-Cancer Therapy (SACT) dataset required for:
The SACT data collection covers patients receiving cancer chemotherapy in or funded by the NHS in England. It relates to all cancer patients, both adult and paediatric, in acute inpatient, daycase, outpatient settings and delivery in the community. It covers chemotherapy treatment for all solid tumour and haematological malignancies and those in clinical trials.

Linkage will initially allow assessing the completeness of submissions of oncology records to the audit and explore whether the chemotherapy data items in the Audit could be dropped to ease the burden of data collection.
The request is also for SACT data to be returned for patients who fit the inclusion criteria but are not included in Audit cohort.

The SACT data with the Audit Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes.

The Radiotherapy Dataset (RTDS) required for:
The RTDS holds information on every patient treated with radiotherapy funded by the National Health Service (NHS) in the UK.

Linkage will initially allow assessing the completeness of submissions of radiotherapy records to the audit and explore whether the radiotherapy data items in the Audit could be dropped to ease the burden of data collection.

The request is also for RTDS data to be returned for patients who fit the inclusion criteria but are not included in Audit cohort.

The RTDS data with the Audit Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes.

National Emergency Laparotomy Audit (NELA) Dataset required for:
The NELA collects data on patients undergoing emergency laparotomy and is a Healthcare Quality Improvement Partnership funded Audit.
Linkage will initially allow the assessing of the patients submitted to the National Bowel Cancer Audit that have an emergency laparotomy.
The request is also for NELA data to be returned for patients who fit the inclusion criteria but are not included in the Audit cohort.

The NELA data with the Audit Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes.

NHS England’s Cancer Patient Experience Survey Dataset required for:
The National Cancer Patient Experience collects information reported by patients themselves about the experience of their bowel cancer care.

Linkage would allow the assessing of how representative the Patient Reported Experience measure (PREMs) survey is of all groups of patients, including those not having a major resection and those receiving palliative and supportive care.

The request is for all the colorectal PREMs data to be sent to NHS Digital. The NHS number from the PREMs patients would be linked to the Audit data within NHS Digital.

The PREMs data with the Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes.

The collection of PREMS data as part of this agreement is limited to prospective data from 2017 onwards, this follows a successful amendment request to CAG to address issues of notifying patients of the use of the data. This approval (outcome letter included in Evidence) supercedes the previous 2015 approval relating to use of retrospective PREMS data. The legal basis for the PROMS and PREMS linkage is the National Health Service Act 2006 - s251 - 'Control of patient information'. 2015 following a successful amendment request

NHS England’s National Cancer PROMs Programme of the National Survivorship Initiative Dataset required for:
NHS England’s National Cancer PROMs Programme of the National Survivorship Initiative collects information reported by patients themselves about the outcomes of their bowel cancer e.g. symptoms, functional status and quality of life.

Linkage would allow the assessing of the feasibility of using information reported by patients themselves about the outcomes of their bowel cancer.

The request is for all the colorectal PROMs data to be sent to NHS Digital. The NHS number from the PROMs patients would be linked to the Audit data within NHS Digital.

The PROMs data with the Tumour id is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour id is used for linkage purposes.

The collection of PROMS data as part of this agreement is limited to retrospective data only.

Welsh hospital episode data

The Patient Episode Database for Wales (PEDW) records all episodes of inpatient and day case activity in NHS Wales hospitals. This includes planned and emergency admissions, minor and major operations, and hospital stays for giving birth. Hospital activity for Welsh residents treated in hospitals in England is also included.
The data are collected and coded at each hospital. The records are then electronically transferred to the NHS Wales Informatics Service (NWIS), where they are validated and merged into the main database.

The request is also for PEDW data to be returned for patients diagnosed in Wales only who fit the inclusion criteria but are not included in Audit cohort.

The PEDW data with the Audit Tumour ID is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that they already hold. The Audit Tumour ID only is used for linkage purposes.

Additional evidence has been added to this agreement in response to questions from IGARD (11.05.2017) about continued CAG support for the s251 approval relating to flow of PEDW data.

Intensive Care National Audit and Research Centre data:
The Intensive Care National Audit and Research Centre (ICNARC) hosts the case mix programme (CMP) from where NHS Digital will collect the data. The Case Mix Programme is an audit of patient outcomes from adult, general critical care units (intensive care and combined intensive care/high dependency units) covering England, Wales and Northern Ireland.

The CMP is listed in the Department of Health’s ‘Quality Accounts’ as a recognised national audit by the National Advisory Group on Clinical Audit & Enquiries (NAGCAE) for ‘Acute’ care.

Currently 100% of adult, general critical care units participate in the CMP. Other specialist units, including neurosciences, cardiac and high dependency units, also participate.

The CMP is open to both NHS (publically funded) and independent sector critical care units.

Critical care units collect data on all the patients they admit to their unit. They securely submit this data and the CMP team run over 600 validation checks, identifying errors and missing information. Units then have a chance to correct and complete the data before analyses.

ICNARC compare the data from these patients with the outcomes from other similar patients, other similar units and all the units in the CMP. The unit receives a Data Analysis Report which identifies trends over time showing how the unit compares with others and helps the unit understand more about the care they deliver. It aims to assist them in decision-making, resource allocation and local quality improvement.

The ICNARC data with the Audit Tumour ID is shared with the Clinical Effectiveness Unit of the Royal College of Surgeons for linking to the Audit data that is already held. The Audit Tumour ID only is used for linkage purposes.

Cancer Outcomes and Services Dataset (COSD)
COSD data when linked to National Bowel Cancer Audit (NBCA) data will be used to describe in further detail those patients with more advanced disease and rectal cancer and to assess the representativeness of patients captured in NBCA. This linkage will allow further investigation of the quality of the audit data and the opportunity to address concerns that there are cases of bowel cancer which are not being recorded in the audit. It is intended to use the data to assess the extent of possible missing data and any patterns relating to this, e.g. particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation. Linkage with COSD will enable the NBCA to further determine the pathway of care for patients with advanced disease and to describe in further detail the management and outcomes of patients with rectal cancer.

Cancer Registration Data
The Cancer Registration data will supplement the cases that are collected in COSD as Cancer Registration services undertake active case finding and will pick up cases of bowel cancer that have not been entered in to the NBCA. In order for the Audit to be able to report on the complete set of patients diagnosed with bowel cancer, records will be examined for patients who were identified in Cancer Registration data but who are not in NBCA. This will help to further assess the representativeness of patients captured in NBCA It is intended to use the data to assess the extent of possible missing data and any patterns relating to this, e.g. particular geographical areas under-reporting cases or any potential linkage to under presentation related to social deprivation.

Linkage to both COSD and Cancer Registration data will enhance the existing data collection to ensure that a full picture of the patient journey is collected for reporting purposes. The audit team will also look at the completeness of the collection of data items within COSD to assess whether any data items collected in the NBCA collection could be obtained from COSD in future years, thereby reducing the burden of collection on trusts going forwards. Linkage to the Cancer Registration data may also provide some options to reduce the collection burden in addition to providing information on the number of cases of bowel cancer which may be registered but are not included in the audit.

Yielded Benefits:

At national level the audit is able to report the following outcomes: - Overall 90-day mortality after major surgery has steadily reduced over five years from 5.4 per cent in 2010-11 to 3.8 per cent in 2014-15. - Two-year survival in patients having major surgery has improved from 80% in 2009-10 to 82% in 2012-13 - Rates of laparoscopic surgery have increased from 42% in 2010-11 to 61% in 2014-2015. There has been no rebound increase in rates of conversion from laparoscopic to open surgery over this time (9.0% to 8.5%) - The proportion of patients being seen by a clinical nurse specialist has increased from 87% in 2010-11 to 92% in 2014-15. - The rate of rectal cancer patients having a local excision to remove their cancer has increased from 5.3% in 2010-11 to 6.8% in 2014-15. Supporting local trust level improvement: - Since 2013, the audit has provided individual trust reports comparing results to the local and region and nationally. - In 2016, the audit started to provide MDTs with individualised slide packs of the trust results. 50% of MDTs reported using these. - Potentially outlying trusts report that they have carried out local quality improvement including case note review. - Clinical leads have reported taking their individual trust reports to their CEO to justify increased resources. Providing information to patients and the public - The 2016 patient friendly version of the annual report has had 474 downloads since the publication date in December 2016. - The Clinical Outcomes Publication data is published on NHS Choices. - The audit and the data in the reports are promoted to the public via bowel cancer charities.

Expected Benefits:

The Audit outcomes are published in annual reports, scientific journals and the consultant outcomes publications. The intended audience are clinicians, healthcare professionals, Medical Directors, CEs, audit managers, commissioners, NHS England, public and patients.

Trusts will use the outcomes in the annual reports to assess their care against national standards and benchmark against other trusts, make improvements which in turn will benefit patients. The Audit is able to identify and report the following year whether improvements have been made. The outputs will show whether the trusts are meeting national guidance such as NICE and whether there is any variation in the provision of care. The Audit outcomes such as 90-day post-operative mortality are risk-adjusted and any potential outlying trusts are identified as part of the Audit outlier policy. Trusts are notified that they are showing as an alarm and will investigate the cause; this can either be down to data quality issues or clinical practice. The trust will address the cause and either review the data submitted to the Audit or their clinical practice. Improvements in clinical practice have a direct impact on improvements in patient care.

The trust profiles are publically available, providing transparency and enabling patient choice.
Publishing 90-day post-operative mortality outcomes at individual consultant level provides transparency and enables 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. The work is highly relevant to current clinical practice and publication will allow us to disseminate the findings widely amongst health professionals.

The SACT dataset would be linked to the audit dataset and would be used to assess completeness of submissions of oncology records to the audit and to explore whether the burden of data collection could be reduced by substituting audit items for items from the national chemotherapy dataset.

The RTDS dataset would be linked to the audit dataset and would be used to assess completeness of submissions of radiotherapy records to the audit and to explore whether the burden of data collection could be reduced by submitting audit items for items from the national radiotherapy dataset.

The NELA data will be linked to the National Bowel Cancer Audit data to provide further findings on emergency laparotomy patients and their treatments and outcomes.

Linkage to the Intensive Care data allows the Audit to report patterns of care and outcomes while patients were admitted to critical care. The Audit is able to examine the characteristics of the patients admitted to critical care.
The PROMs and PREMs data will be linked to the National Bowel Cancer Audit data to provide further findings on the feasibility of using information reported by patients themselves on the experience of their treatment and care the outcomes of their bowel cancer, and whether this can be incorporated into the National Audit.

The information from patients on how they rate their quality of life and treatment following their diagnosis for cancer will help the Health Service measure and improve the quality of future services and understand how the experience has affected patients’ longer term.

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Linkage to the COSD and Cancer Registration data will identify whether the Audit are missing cases and whether there is the potential for the NBCA to drop data items which could be collected via the COSD and potentially reduce the burden of data collection for trusts.

Linkage to the COSD will enable the NBCA to further explore and report on the management and outcomes of patients with rectal cancer and advanced disease.

Outputs:

Annual report
The National Bowel Cancer 2018 Annual report is targeted for publication in Autumn 2018. With publications in peer-reviewed journals in 2018.

Publication in peer-reviewed journals will allow presentation of the Audit methodology and results in more detail than in the Annual reports.

The Audit will provide national and trust level outcomes on end of life care.

The Audit will report on the feasibility of using information reported by patients themselves about the experience of their bowel cancer care and the feasibility of using information reported by patients themselves about the outcomes of their bowel cancer e.g. symptoms, functional status and quality of life.

Linking Date of Death to the Audit data will provide short-term and long-term survival outcomes.

The outputs are reported at National, Cancer Alliance and NHS Trust level. Examples of specific outputs are:
• Percentage of patients with surgical intent
• Percentage of patients with complications
• Risk adjusted 90-day post-operative mortality
• Risk adjusted 2 year mortality
• Risk adjusted complication rate
• Percentage of adequate lymph node resections
• Percentage of positive resection margin
• Length of stay
• Percentage of unplanned readmissions

The linked HES/Audit/death data dataset is also used to report the individual Consultant Outcomes as required by NHS England under Everyone Counts. The outcomes are 90-day post-operative mortality. The Consultant Outcomes are published on the Professional Body website and NHS Choices. The target date for delivery is Autumn 2018.
http://www.nhs.uk/Service-Search/Hospital/LocationSearch/7/Procedures?procedure=Gastrectomy
http://www.acpgbi.org.uk/surgeon-outcomes/

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

Linkage to ICNARC data will enable assessment of outcomes for patients that are cared for in intensive care following surgery to see if there are any differences in outcomes between different patient pathways. This will be progressed during 2017/18 with feasibility work once the data has been received from ICNARC.

Outputs from linkage to COSD and Cancer Registration data will relate to assessment of completeness of NBOCA data, assessment of missing cases and the potential to reduce the burden of collection in future years by using data from COSD and Cancer Registration and removing any duplication between these collections and the NBOCA dataset. This will be progressed during 2017/18 once the data request has been progressed with PHE Office of Data Requests and analysis will be included in outputs such as topic specific short reports or sections included in the next Annual Report.

If the linkage to COSD and Cancer Registration data identify data completeness and data quality issues then the NBCA will work with the Audit's Clinical Advisory Group and lead clinicians to encourage trusts to improve their data quality.

Outputs on the management of patients with rectal cancer and advanced disease will be included in the NBCA's annual report.

Processing:

Audit Tumour ID:

The Audit Tumour ID is a pseudonym, which is unique to each patient in the cohort. This primary key is used to reduce the flow of patient identifiers where data is requested from other data sets and where data is sent from CASU to CEU. The key is held by the NHS Digital CARMS team. The Audit Tumour ID is used for linkage to the HES, ONS, SACT, RTDS, NELA, PEDW, ICNARC, PROMs and PREMs data.

The Royal College of Surgeons Clinical Effectiveness Unit Audit Tumour ID which they use as a pseudonym. The CEU also receive Date of Death.

Processing activities:
1. All eligible NHS trusts submit data on their patients with bowel cancer to a system hosted by NHS Digital. This system holds data on patient characteristics, pre-treatment tumour stage, the staging process and the management plan of all patients and if appropriate data on process and outcomes of surgery, chemotherapy and radiotherapy. In keeping with minimum datasets and easing the burden on NHS staff, date of death, place of death and cause of death is not collected in the audit as it is recognised that this could be sought through the ONS. Date of death and place of death will be linked to the audit data to provide survival outcomes. Place of death will be in the form of a code from ONS known as Communal Establishment Code and will remove the potential of the address being identifiable to the patient.
2. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode ) are sent securely by the CARMS team to the data linkage team with an Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) for linking to the HES data and also the DARS team for the death data.
3. HES data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
4. HES data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
5. Death data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
6. The HES data with the Audit Tumour ID and the Death data with the Audit Tumour ID are sent by the CARMS team to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
7. The CEU then analyse the linked Audit/HES/death data dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Linkage to the SACT dataset:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Chemotherapy Intelligence Unit within Public Health England. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the Chemotherapy Intelligence Unit.
2. SACT data is returned to the CARMS team with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. SACT data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
4. The SACT data with the Audit Tumour ID are sent by the CARMS team to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/SACT dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Linkage to the RTDS dataset:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Office for Data Release (ODR), Public Health England
2. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the Office for Data Release (ODR), Public Health England
3. RTDS data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
4. RTDS data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
5. The RTDS data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/RTDS dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Linkage to the NELA dataset:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode ) are sent by the CARMS team to the National Institute of Academic Anaesthesia's Health Services Research Centre
2. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the National Institute of Academic Anaesthesia's Health Services Research Centre.
3. NELA data is returned to the CARMS team with only the Audit Tumour ID, none of the other patient identifiers are returned.
4. NELA data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
5. The NELA data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/NELA dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Linkage to the NHS England’s Cancer Patient Experience Surveys
1. Audit Patient Identifiers (NHS number) are sent by the CARMS team to Public Health England.
2. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to PHE.
3. PREMs data is returned to the CARMS team with only the Audit Tumour ID, none of the other patient identifiers are returned.
4. PREMS data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
5. The PREMs data with the Audit Tumour ID are sent by the Clinical Audit Support Unit to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.

Linkage to NHS England’s National Cancer PROMs Programme of the National Survivorship Initiative.
1. Audit Patient Identifiers (NHS number) are sent by the CARMS team to the National Cancer Registration and Analysis Service (NCRAS), hosted by PHE.
2. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to NCRAS.
3. PROMs data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
4. PROMS data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
The PROMs data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.

Linkage to the Patient Episode Database for Wales (PEDW) dataset (from NHS Wales Informatics Service NWIS)

The audit will use the Hospital Site code where the patient was diagnosed; this tells the audit where the patient were diagnosed. If that is in Wales the audit will then pull the NHS number, Date of Birth, Sex and Postcode to send the relevant cohort to NWIS. There is a risk that the patients are diagnosed in Wales but are resident in England and go on to receive treatment elsewhere. In which case the audit won't get any further information on those patients from PEDW.

1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode ) are sent by CARMS to NWIS only for patients identified as being diagnosed in Wales. The full audit cohort will not be sent to NWIS at any time. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to the NWIS
2. PEDW data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. PEDW data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
4. The PEDW data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.

The CEU then analyse the linked Audit/PEDW dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Additional evidence has been added to this agreement in response to questions from IGARD (11.05.2017) about continued CAG support for the s251 approval relating to flow of PEDW data.

Intensive Care National Audit and Research Centre data:
Linkage to Intensive Care National Audit and Research Centre (ICNARC) dataset:
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode ) are sent by CARMS to ICNARC. An Audit Tumour ID (a pseudonym which is unique to each patient in the cohort) is also sent to INCARC
2. ICNARC data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. The ICNARC data with the Audit Tumour ID are sent by NHS Digital CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/ICNARC dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Cancer Outcomes and Services Dataset
Linkage to Cancer Outcomes and Services Dataset
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by NHS Digital CARMS team to the Office for Data Release (ODR), Public Health England. An Audit Tumour ID is also sent to the Office for Data Release (ODR), Public Health England
2. COSD data is returned to NHS Digital CARMS Team with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. The COSD data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/COSD dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

Cancer Registration data
Linkage to Cancer Registration data
1. Audit Patient Identifiers (NHS number, Date of Birth, Sex and Postcode) are sent by the CARMS team to the Office for Data Release (ODR), Public Health England. An Audit Tumour ID is also sent to the Office for Data Release (ODR), Public Health England.
2. Cancer Registration data is returned to CARMS with only the Audit Tumour ID, none of the other patient identifiers are returned.
3. Cancer Registration data is also returned for patients who fit the inclusion criteria but are not included in the Audit cohort.
4. The Cancer Registration data with the Audit Tumour ID are sent by CARMS to the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons for linking to the Audit data that they already hold having previously been sent from CARMS to the CEU. The Audit Tumour ID is used as a pseudonym to allow linkage of the datasets.
The CEU then analyse the linked Audit/ Cancer Registration dataset to produce statistical tables for inclusion in the outputs listed in the next section. The CEU will not make record level information available to any other party. The CEU will only use the data for the stated purposes.

The data requested is to be used for the performance of services under contract to the Healthcare Quality Improvement Partnership (HQIP). All Intellectual Property Rights in any guidance, specifications, instructions, toolkits, plans, data, drawings, databases, patents, patterns, models, design or other material, furnished or made available to the Health and Social Care Information Centre as part of this request remains vested solely in HQIP. This IPR is in turn vested to NHS England through HQIP’s headline contract with them’

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

The Bowel Cancer Audit has been continuous since 2002 and data is retained from that time up to the present. The data is retained so that any queries about previously published reports can be queried.

The audit reports on patients over the most recent 5 years. A refresh of data is required for the most recent 10 years. This is to provide the most up-to-date information on patients diagnosed during this 5-year reporting period, with 5 years’ preceding HES data to ensure that patients with a historic diagnosis of bowel cancer are not included as primary bowel cancer diagnoses. Data will be retained for 5 years after the end of the contract to allow queries about previously published results to be answered, and to ensure consistency checks can be carried out over multiple data extracts. This is In line with DH data retention requirements. The previous 5 years would only be used in the event of queries relating to previous audit years and the published annual reports from these years.