National Child Mortality Database (NCMD)

In term In term in the September 2026 edition: the latest version runs to 7 July 2028.

Reference: DARS-NIC-331142-P5K6M
Current version: v5.6
Term of current version: 8 July 2025 to 7 July 2028
Start date: 18 November 2021
Data controller: Joint Data Controller
Commercial purposes: No
Sublicensing: No
Files released to date: 370

Data controllers

Why the data was released

Objective for processing

University of Bristol (UoB) and Healthcare Quality Improvement Partnership (HQIP) requires access to NHS England data for the purpose of the following research project:

National Child Mortality Database (NCMD)

The following is a summary of the aims of the research project provided on behalf of UoB and HQIP:

The National Child Mortality Database (NCMD) Programme is an NHS England funded and Healthcare Quality Improvement Partnership (HQIP) commissioned programme that collects and analyses information on all children who die across England.

The NCMD Programme is delivered by the University of Bristol in collaboration with the University of Oxford, University College London (UCL) Partners and the software company Quality Education Solutions (QES); QES are the NCMD system developer. The NCMD Programme also includes representation from bereaved families through the NCMD charity partners: Child Bereavement UK, The Lullaby Trust and Sands, who advise the Programme in their capacity as members of the NCMD Steering Group.

The NCMD national data collection and analysis system is the first of its kind anywhere in the world to record comprehensive data, standardised across a whole country (England), on the circumstances of children’s deaths. The purpose of collating information nationally is to ensure deaths are learned from, learning is widely shared and actions are taken, locally and nationally, to reduce the number of children who die.

NCMD collates data from the reviews of all child deaths in England by the Child Death Review Partners (CDRPs) via their Child Death Overview Panels (CDOPs). This is a statutory process and provision is made within the Children Act 2004 for the collection and processing of this data without consent. More specifically, NCMD collect data on all children born in England who die before their 18th birthday.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Study and analyse the patterns, causes and associated risk factors of child mortality in England, providing information to target preventative health and social care and to assist in policy decisions

• Develop a sustainable model after the lifetime of the project.

Throughout the pandemic, NCMD accelerated understanding of how COVID-19 impacted children and identified opportunities for intervention. This was achieved through establishing a child mortality surveillance system at the start of the pandemic, which the NCMD Programme was tasked by NHS England to set up a child mortality surveillance system. The purpose is to provide the means for real time surveillance on child mortality in England to inform NHS England and the Department of Health and Social Care (DHSC). This improved the knowledge and evidence base about how COVID-19 impacted new-born babies, infants and children, including those with chronic comorbidities, and those whose death is sudden and unexpected.

The following NHS England Data will be accessed:

• Hospital Episode Statistics, Admitted Patient Care, Accident & Emergency, Outpatients, Emergency Care Data Set (ECDS), Maternity Services Data Set (MSDS), Mental Health Services Data Set (MHSDS), Community Services Data Set (CSDS), Medicines dispensed in Primary Care (NHSBSA data), NDRS Cancer Registration Data Set, Civil Registrations of Death - Secondary Care Cut – necessary to provide a more granular level of data, in an appropriate format for analysis, on activity throughout the child’s life on:

• Secondary care usage, including ED attendances (HES APC, HES A&E, ECDS, HES OP)

• Reasons for attendance/admission (HES APC, HES A&E, ECDS)

• Diagnoses and treatment (HES APC, HES OP, NCRAS, MHSDS)

• Outpatient appointments and procedures (HES OP)

• Maternal risk factors (MSDS)

• Medicines prescribed (Medicines dispensed in Primary Care dataset)

• Community service usage (CSDS).

This will give the NCMD a richer level of data, complimenting the existing NCMD data. For example, in the most recent NCMD thematic report on child deaths due to asthma or anaphylaxis (ncmd.info/asthma), linkage to HES and dispensing data enabled more comprehensive analysis on prior A&E attendances, inpatient admissions, and inhalers dispensed in the 12 months prior to the child’s death. In turn, this comprehensive analysis meant that these indicators for poorly controlled asthma could be reported and used as evidence to make recommendations for action.

The level of the Data will be:

• Identifiable – necessary because Identifiable record level data is required to allow for linking with the records held on the National Child Mortality Database (NCMD) system

The Data will be minimised as follows:

• all children born in England who die before their 18th birthday

• limited to a cohort of ~3,300 children

HQIP is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - 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;

The lawful basis for processing special category data under the UK GDPR is:

Article 9 (2)(i): 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 the NCMD programme aims to drive improvements in the quality and safety of care and to improve outcomes for patients.

The Children’s Act 2004 section 16N is the legal basis used to address the Common Law Duty of Confidentiality for the release and retention of identifiable data.

All Integrated Care Boards (ICBs) are responsible for ensuring that data flows into the National Child Mortality Database (NCMD).ICBs share data with NHS England on child mortality in their area which is then shared with NCMD. The sharing of this data ensures that the NCMD can operate effectively and efficiently, reducing the burden on ICBs and ensuring that NCMD have all relevant information to meet their duties under the Children Act 2004.

The funding is provided by NHS England. The funding is specifically for the project described.

UoB is the processor acting under the instructions of HQIP. UoB’s role is limited to the processing and analysis of the data for this project only.

A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above.

Processing activities

UoB will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Name, Date of Birth and Date of Death and postcode) for the cohort to be linked with NHS England data.

NHS England will provide the relevant records from the HES APC, HES A&E, HES OP, ECDS, MSDS, MHSDS, CSDS, NHSBSA, NDRS Cancer Registration Data Set and Civil Registration of Deaths datasets to UoB. The Data will:

• contain directly identifying data items including NHS Number, Name, Date of Birth and Date of Death and postcode which are required to link the Data at record level with data already held by the recipient

The Data will not be transferred to any other location.

The Data will be stored on servers at UoB.

UoB stores Data on the Cloud provided by Quality Education Solutions Ltd (QES).

The Data will be accessed onsite at the premises of UoB.

The Data will also be accessed by authorised personnel via remote access.

The Controllers must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England/Wales at any time.

Access is restricted to individuals within the NCMD department of UoB who have authorisation from Principal Investigator. All such individuals are substantive employees of UoB.

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

The Data will not be linked with any other data.

The identifying details will be stored in a separate database to the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Researchers from the NCMD department will analyse the Data for the purposes described above.

Expected output

The expected outputs of the processing will be:

a. Reports - the NCMD monthly reports to NHS England, and the NCMD commissioned annual and thematic reports (aggregate data only). NCMD is commissioned to publish 3 public facing reports annually: one annual report and 2 thematic reports (themes vary every year) as informed from the data in consultation with the wider programme stakeholders’ group and as required by NHS England. The stakeholders are the NCMD Programme Steering and Professional Advisory Groups. The terms of reference documents for both groups are available on the NCMD website - Governance - National Child Mortality Database. Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS England will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future.

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

c. Presentations - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health), dissemination events organised by NCMD launching the programme's commissioned reports with stakeholders and interested individuals and organisations.

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

The NCMD commissioned annual and thematic reports are public facing and only include aggregate data with small numbers supressed.

Dissemination channels: journals, workshops, webinars, social media, public reports, direct bilateral engagement using new and established relationships, industry newsletters, briefing documents, co-hosted events, open source frameworks, etc.

The NCMD Programme employs a Senior Communications and Engagement Officer who leads on the NCMD’s stakeholders engagement and communications planning and activities. NCMD have a well established communications and stakeholders engagement strategy which ensures that any information about the programme, its findings and impact reaches all interested groups and the programme engages with these groups in knowledge-sharing and dialogue. A wide variety of communication channels are used, including the NCMD website (https://www.ncmd.info/about/) and newsletters (https://www.ncmd.info/newsletters/).

NCMD also organises a series of free webinars (https://www.ncmd.info/webinars/) dedicated on different topics of interest to key stakeholders as well on the programme’s published reports.

In addition, NCMD in collaboration with its PPPI group and partner charities, develops leaflets for families (https://www.ncmd.info/2020/10/15/families-postcard/) and public and families engagement materials (https://www.ncmd.info/families/) to raise awareness and understanding of the key activities carried out by the programme. For instance, at the start of the COVID-19 pandemic, as part of its COVID-19 communications strategy, NCMD developed the C-H-I-L-D acronym to engage child death review professionals and ensure reporting of all COVID-19 related deaths (https://www.ncmd.info/2020/03/20/covid19/). It prompted professionals to think beyond COVID-19 to help in fully understanding the impact of the virus on children. NCMD develops detailed communications plans for all main commissioned reports and all other published outputs and journal publications. These include also detailed plans for how the programme responds to press and media enquiries.

Expected measurable benefits

NCMD is commissioned to identify how and why children die and to make recommendations for how to reduce the number of children who die. It is part of the statutory child death review (CDR) process, which applies to all children in England who die before their 18th birthday. NCMD’s role in the CDR process is to collate and analyse multi-agency data from Child Death Overview Panels (CDOPs) and, via annual and thematic reports, to put forward evidence-based recommendations to agencies for implementation at a national level.

The multi-agency aspect of the programme enables NCMD to identify potential issues with the delivery of any service engaging with children and young people (CYP) and their families including healthcare, social care, education, law enforcement, charity sector and bereaved families themselves. It also allows for identification and analysis of the wider social determinants of health including those factors in the child, social environment, parenting capacity and physical environment which may play a part in child mortality.

The value of the statutory CDR data collection and NCMD national analysis made significant impact during the COVID-19 pandemic as the results from the NCMD real-time child mortality surveillance system and the recommendations from the NCMD commissioned thematic reports enabled immediate actions to reduce child deaths and improve the health and wellbeing of children and families in England. More specifically, the benefits from linking with the NHSE records on all children who die, will have an impact in the following areas:

1.Health and social care government policies

The data from the NCMD real-time surveillance of child mortality in England during the COVID-19 epidemic contributed to immediate learning and understanding of the impact of the epidemic on child mortality at a country level. The NCMD surveillance data informed the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and was used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools.

By linking up information received from the child death review process notifications with the requested datasets specified is essential for completing and validating the NCMD data and ensuring the findings are representative of all child deaths in the country at given point in time.

The benefits to health and social care also arise from the individual child death reviews, which include learning points and recommended actions for service improvements and address any potentially avoidable modifiable and contributory factors related to deaths in the future. Linking up with NHSE records will ensure the information is as complete and accurate as possible so more meaningful analysis can be produced to better inform service improvement actions and policies.

2. The society as a whole

The information collated from all the child deaths reviewed may identify themes from across a number of reviews. The impact of some these will be to bring benefits for the society as a whole as the qualitative analysis on the identified themes can inform recommendations leading to reducing the number of children who die. For instance, NCMD explores the link between child mortality, deprivation and ethnicity to identify the specific factors related to deprivation in the child's life that should be tackled to improve the lives of children living in more disadvantaged areas or circumstances. NCMD provides the complete and timely cohort of child deaths at country level, however improving ethnicity data completeness will enable greater insight into this area which will support reliable analysis. In addition, more work is required to understand why communities of colour are over-represented in child mortality data including looking at communication and information sharing with these communities, access to services (including but not limited to healthcare) and analysing good practice where it exists. Linking up with the NHSE records will improve the NCMD data completeness allowing for more reliable analysis of the relationship between deprivation, ethnicity, and child mortality, potentially leading to reducing health inequalities and the number of child deaths in future.

3. The NHS

There are also benefits for the NHS. NCMD data has provided information on how COVID-19 impacted on extremely vulnerable children, using previously linked data. The analysis of the NCMD data contributes to the development of paediatric early warning scores for managing rapidly deteriorating children. There are additional benefits from analysing the information from the reviews of deaths due to asthma, children with life-limiting conditions, children with a learning disability, and other chronic conditions deaths to identify any modifiable factors related to the care that children receive to inform service improvement. The ICD-10 coded data on underlying conditions and comorbidities for all children that die from the records held at NHS England will be crucial to achieve this as these nationally standardised and quality assured data will allow NCMD to carry out the more in-depth thematic analysis on the categories of death to support the real-time child mortality surveillance and reporting to NHS England.

NCMD is also currently working on a thematic report aiming to identify the common characteristics of children and young people, up to the age of 18, who die and whose parents are consanguineous. The findings and learning from the report will provide insights for policymakers, commissioners and those providing services for children and young people and enhance the existing evidence base to inform the NHSE national strategy and support ongoing and future interventions for these families.. Similarly, linkage will support future thematic reports that could potentially include deaths due to cancer, health inequalities, abuse or neglect, or re-visiting previous topics such as suicide, deaths of children with life-limiting conditions, or asthma and anaphylaxis deaths.

The requested datasets will complement the information held on NCMD to support this reporting and meet the overall aim of NCMD which is improve the knowledge and understanding of why children are dying. The Medicines dispensed in Primary Care dataset will enable richer analysis on risk analysis, such as the number of reliver/preventer inhalers prescribed for children who died due to asthma, as described in the recent Asthma and Anaphylaxis report where this linkage was used (see ncmd.info/asthma).

Similarly, data from NCRAS will support further work analysing deaths due to cancer, and future thematic reports. The dataset will allow for more comprehensive cancer diagnostic data over the child’s life, complimenting the NCMD data, to generate better insights and reporting.

Community services data set will also compliment NCMD data and further analysis can then be undertaken to see which services were accessed prior to the child’s death and at what point in their life.

Benefits reported so far

Throughout recent years the NCMD have contributed to policy change and has aided in the publication of guidance and safety notices for parents and healthcare professionals.

In addition to this, the findings of the NCMD have added to the current understanding deaths in children and young people, and the need for preventative healthcare measures. Specifically, the NCMD has:

• Flagged the need for earlier detection and identification of Strep A

• Identified children living in urban areas have had a higher risk of dying from infection, with the risk of dying from infection being higher in the most deprived neighbourhoods

• Shown that 98% of Sudden Unexpected Death in Childhood (SUDIC) cases had at least one clinical, statutory, family, social or environmental vulnerability factors associated with them

• Identified that the most commonly occurring family or social vulnerability factors, identified in over half of cases, are smoking in either parent (62.5%), mother smoking (51.6%), father smoking (51.6%), poor mental health in either parent (56.2%) and poor mental health in mother (50.0%). Over a third of cases identified previous domestic abuse (not directly related to the death) (40.6%) and smoking in both parents (39.1%). Drug misuse and alcohol misuse have been identified as separate issues; recorded for either parent they are identified in over a quarter of cases (26.6% and 26.6% respectively).

The NCMD has recently contributed to three All-Party Parliamentary Groups, and the programmes report on Sudden Unexpected Death in Childhood (SUDIC) report was debated in parliament.

Datasets on the current version

Legal basis for provision: Health and Social Care Act 2012 - s261(5)(d)

Datasets approved under DARS-NIC-331142-P5K6M-v5.6
Dataset	Type of data	Sensitivity	Frequency	Confidential data
Civil Registrations of Death	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Civil Registrations of Death - Secondary Care Cut	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Community Services Data Set (CSDS)	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Emergency Care Data Set (ECDS)	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Hospital Episode Statistics Accident and Emergency (HES A and E)	Identifiable	Non-Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Hospital Episode Statistics Admitted Patient Care (HES APC)	Identifiable	Non-Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Hospital Episode Statistics Outpatients (HES OP)	Identifiable	Non-Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Maternity Services Data Set (MSDS) v1.5	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Maternity Services Data Set (MSDS) v2	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Medicines dispensed in Primary Care (NHSBSA data)	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
Mental Health Services Data Set (MHSDS)	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
NDRS Cancer Registrations	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent
NDRS Congenital Anomalies	Identifiable	Sensitive	One-Off	Statutory exemption to flow confidential data without consent

Files released

Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.

Patient opt-outs were not applied to any of the 370 files released under this agreement, across every version. About opt-outs

Files released against version 5.6 of this agreement, summarised by dataset.

Files released under DARS-NIC-331142-P5K6M-v5.6
Dataset	Files	First released	Last released	Opt-outs applied
Maternity Services Data Set (MSDS) v2	66	December 2025	December 2025	No
Mental Health Services Data Set (MHSDS)	60	December 2025	December 2025	No
Community Services Data Set (CSDS)	42	November 2025	November 2025	No
Hospital Episode Statistics Admitted Patient Care (HES APC)	24	October 2025	October 2025	No
Hospital Episode Statistics Outpatients (HES OP)	22	October 2025	October 2025	No
Hospital Episode Statistics Accident and Emergency (HES A and E)	12	October 2025	October 2025	No
Emergency Care Data Set (ECDS)	7	October 2025	October 2025	No
Civil Registrations of Death	1	October 2025	October 2025	No
Medicines dispensed in Primary Care (NHSBSA data)	1	October 2025	October 2025	No
NDRS Cancer Registrations	1	June 2026	June 2026	No

Version history

The register lists each renewal of this agreement as a separate row. This site has 6 versions.

DARS-NIC-331142-P5K6M-v5.6 8 July 2025 to 7 July 2028

Title: National Child Mortality Database (NCMD)
Commercial: No
Sublicensing: No
Datasets: 13
Files released: 236

Datasets: Civil Registrations of Death; Civil Registrations of Death - Secondary Care Cut; Community Services Data Set (CSDS); Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Maternity Services Data Set (MSDS) v1.5; Maternity Services Data Set (MSDS) v2; Medicines dispensed in Primary Care (NHSBSA data); Mental Health Services Data Set (MHSDS); NDRS Cancer Registrations; NDRS Congenital Anomalies

What changed from DARS-NIC-331142-P5K6M-v4.4

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

Fields changed from DARS-NIC-331142-P5K6M-v4.4
Field	Was	Became
Start date	~~2025-01-10~~	2025-07-08
End date	~~2026-01-09~~	2028-07-07
Civil Registrations of Death - Secondary Care Cut: legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
Emergency Care Data Set (ECDS): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
MSDS (Maternity Services Data Set) v1.5: legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)
Mental Health Services Data Set (MHSDS): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)~~	Health and Social Care Act 2012 - s261(5)(d)

Datasets: + Civil Registrations of Death; + Community Services Data Set (CSDS); + MSDS (Maternity Services Data Set) v2.0; + Medicines dispensed in Primary Care (NHSBSA data); + NDRS Cancer Registrations; + NDRS Congenital Anomalies

Objective for processing

University of Bristol (UoB) and Healthcare Quality Improvement Partnership (HQIP) requires access to NHS England data for the purpose of the following research project: National Child Mortality Database (NCMD) The following is a summary of the aims of the research project provided on behalf of UoB and HQIP: [2 paragraphs unchanged] NHS England and HQIP are joint data controllers of the NCMD data. The University of Bristol and QES are data processors of the NCMD data. The NCMD partners – the University of Oxford and UCL Partners – each lead on different strands of the NCMD main contract of work e.g., on public and patient involvement and on quality improvement of the local mortality review processes respectively. University of Oxford and UCL do not require direct access to NCMD data or NHS England data for processing and analysis in performing their roles as such are not considered data controller nor data processor for the data requested under this agreement. [2 paragraphs unchanged] ~~NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.~~ NCMD’s national data collection started on 1st April 2019 and includes information about children who have died since 1st April 2019 as well as information about those who died prior to 1st April 2019 where their death review process was still ongoing on that date. [5 paragraphs unchanged] NCMD provides a unique opportunity to accelerate understanding of how COVID-19 is impacting children and identify opportunities for intervention. The knowledge and evidence base about how COVID-19 will threaten the lives of new-born babies, infants and children is limited and more information is needed on: Throughout the pandemic, NCMD accelerated understanding of how COVID-19 impacted children and identified opportunities for intervention. This was achieved through establishing a child mortality surveillance system at the start of the pandemic, which the NCMD Programme was tasked by NHS England to set up a child mortality surveillance system. The purpose is to provide the means for real time surveillance on child mortality in England to inform NHS England and the Department of Health and Social Care (DHSC). This improved the knowledge and evidence base about how COVID-19 impacted new-born babies, infants and children, including those with chronic comorbidities, and those whose death is sudden and unexpected. ~~• The impact of chronic morbidities in children on their risk of dying due to COVID-19~~ The following NHS England Data will be accessed: ~~• Sudden unexpected death in infancy (SUDI)~~ • Hospital Episode Statistics, Admitted Patient Care, Accident & Emergency, Outpatients, Emergency Care Data Set (ECDS), Maternity Services Data Set (MSDS), Mental Health Services Data Set (MHSDS), Community Services Data Set (CSDS), Medicines dispensed in Primary Care (NHSBSA data), NDRS Cancer Registration Data Set, Civil Registrations of Death - Secondary Care Cut – necessary to provide a more granular level of data, in an appropriate format for analysis, on activity throughout the child’s life on: ~~• Babies born preterm, where the mother had severe COVID-19.~~ • Secondary care usage, including ED attendances (HES APC, HES A&E, ECDS, HES OP) At the start of the COVID-19 epidemic, the NCMD Programme was tasked by NHS England to set up a child mortality surveillance system. The purpose is to provide the means for real time surveillance on child mortality in England to inform NHS England and the Department of Health and Social Care (DHSC). • Reasons for attendance/admission (HES APC, HES A&E, ECDS) This system is helping to reduce the uncertainties around child deaths related to COVID-19 (direct and indirect), which in turn is helping to inform agency decision-making to limit the direct and indirect impacts of the epidemic. • Diagnoses and treatment (HES APC, HES OP, NCRAS, MHSDS) Through daily data linkage with Public Health England (PHE) virology database, NCMD has the most up to date information on all child deaths (including deaths outside hospital) with positive COVID-19 test results. NCMD provides daily and weekly child mortality figures and weekly trend reports to NHS England and to the National Clinical Director for Children and Young People and intelligence from these reports is feeding up to the National Medical Director and the Chief Medical Officer. • Outpatient appointments and procedures (HES OP) More recently, NHS England have requested NCMD to carry out further, deeper analysis on neonatal deaths as part of the real-time surveillance of child death in the pandemic. Neonatal deaths make up one third of all child mortality (below 18 years) and deaths in maternity/neonatal units form the largest proportion of child deaths. • Maternal risk factors (MSDS) ~~HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:~~ • Medicines prescribed (Medicines dispensed in Primary Care dataset) Article 6 (1) (e) 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. The overall aim of the NCMD programme is to drive improvements in the quality of health and social care for children in England and to help reduce premature mortality. The design and outputs from this programme will provide the data and intelligence to enable strategic focus on the most significant causes and contributory factors in child mortality in England in the medium and long term. They stimulate quality improvement and support organisations to find out if healthcare is being provided in line with nationally agreed standards. This processing is therefore undertaken in the public interest. • Community service usage (CSDS). HQIP rely on Article 9 (2)(i) (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 the NCMD programme aims to drive improvements in the quality and safety of care and to improve outcomes for patients. This will give the NCMD a richer level of data, complimenting the existing NCMD data. For example, in the most recent NCMD thematic report on child deaths due to asthma or anaphylaxis (ncmd.info/asthma), linkage to HES and dispensing data enabled more comprehensive analysis on prior A&E attendances, inpatient admissions, and inhalers dispensed in the 12 months prior to the child’s death. In turn, this comprehensive analysis meant that these indicators for poorly controlled asthma could be reported and used as evidence to make recommendations for action. 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. The level of the Data will be: • Identifiable – necessary because Identifiable record level data is required to allow for linking with the records held on the National Child Mortality Database (NCMD) system The Data will be minimised as follows: • all children born in England who die before their 18th birthday • limited to a cohort of ~3,300 children HQIP is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above. The lawful basis for processing personal data under the UK GDPR is: Article 6(1)(e) - 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; The lawful basis for processing special category data under the UK GDPR is: Article 9 (2)(i): 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 the NCMD programme aims to drive improvements in the quality and safety of care and to improve outcomes for patients. The Children’s Act 2004 section 16N is the legal basis used to address the Common Law Duty of Confidentiality for the release and retention of identifiable data. All Integrated Care Boards (ICBs) are responsible for ensuring that data flows into the National Child Mortality Database (NCMD).ICBs share data with NHS England on child mortality in their area which is then shared with NCMD. The sharing of this data ensures that the NCMD can operate effectively and efficiently, reducing the burden on ICBs and ensuring that NCMD have all relevant information to meet their duties under the Children Act 2004. The funding is provided by NHS England. The funding is specifically for the project described. UoB is the processor acting under the instructions of HQIP. UoB’s role is limited to the processing and analysis of the data for this project only. A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above.

Processing activities

~~No further data will flow under this iteration of the Data Sharing Agreement.~~ UoB will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Name, Date of Birth and Date of Death and postcode) for the cohort to be linked with NHS England data. 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 i.e. employees, agents and contractors of the data recipient who may have access to that data). NHS England will provide the relevant records from the HES APC, HES A&E, HES OP, ECDS, MSDS, MHSDS, CSDS, NHSBSA, NDRS Cancer Registration Data Set and Civil Registration of Deaths datasets to UoB. The Data will: There will be no data linkage undertaken with NHS England data provided under this agreement that is not already noted in the agreement. NHS England data will only be used for the purposes described in this agreement. • contain directly identifying data items including NHS Number, Name, Date of Birth and Date of Death and postcode which are required to link the Data at record level with data already held by the recipient ~~The University of Bristol will link data about all children who have died, with mortality data, to identify the exact cause of death of all children who die in England.~~ The Data will not be transferred to any other location. The child death review process collects information on and identifies the causes of death of the child. However, this information is only collected and recorded in free text, which is how it is supplied to NCMD for analysis. Linking up with the NHS England's mortality data sets will allow NCMD to have access to the ICD-10 coding (International Statistical Classification of Disease and Related Health Problems) for these causes of death as reported in mortality statistics to enable analyses and accurate reporting. The mortality data provided by NHS England is linked to the data held by NCMD so analysis can take place based on age (gestation), sex, ethnicity and categories of death. The Data will be stored on servers at UoB. The data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide. Aggregate, anonymised data about ICD-10 coding for cause of death may be included in the reports to NHS England as part of the real-time child mortality surveillance and monitoring system and when investigating signals from this system on different categories of death and underlying conditions, e.g. perinatal events, acute medical conditions (e.g. asthma), trauma, SUDI (sudden unexpected death in infancy). UoB stores Data on the Cloud provided by Quality Education Solutions Ltd (QES). It is expected there may be registered deaths from the NHS England feeds that have not as yet been notified to NCMD by the CDOPs. It will be important to link these cases with the PHE COVID-19 virology results so most up to date is available for the child mortality surveillance system. The Data will be accessed onsite at the premises of UoB. ~~The identifiers used for the linkage with Public Health England (PHE) are as follows:~~ The Data will also be accessed by authorised personnel via remote access. ~~- Child name / surname,~~ The Controllers must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract. ~~- NHS number,~~ For remote access: ~~- DOB,~~ - Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA; ~~- DOD,~~ - Access controls granting users the minimum level of access required are in place; ~~- Sex,~~ - Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data; ~~- Postcode~~ - Multifactor authentication (MFA) is required for remote access; ~~- and categorisation of death as assigned by NCMD.~~ - Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access; ~~NHS England will run a cohort of everyone who has died under 18 between certain dates and link that to HES, Mortality and MSDS, then flow data back to the University of Bristol.~~ - All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy. Before the case list is sent to PHE, all cases are being reviewed, coded and categorised by the NCMD clinical and CDOP expert group daily. For the deaths from this feed, the cause of death information will be used. No data (supplied by NHS England) is processed outside of the NCMD Programme (based at the University of Bristol) and the SQL database supported by QES is used for the linkage. The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose). ~~There will be no flow of data to NHS England. The data linkage with the following NHS England controlled datasets –~~ The Data will not leave England/Wales at any time. ~~- Hospital Episodes Statistics,~~ Access is restricted to individuals within the NCMD department of UoB who have authorisation from Principal Investigator. All such individuals are substantive employees of UoB. ~~- Civil Registrations - Deaths~~ All personnel accessing the Data have been appropriately trained in data protection and confidentiality. ~~- Maternity Services Data Set~~ The Data will not be linked with any other data. are required to improve the accuracy and completeness of information included in the child mortality surveillance reports and other future reports from NCMD during the pandemic. The data linkage will ensure that all chid deaths since 1st April 2019 (the start of the NCMD data collection and analysis) are notified to NCMD, all case demographic and death registration information are as complete and accurate as possible and that NCMD has a full record of the children’s underlying conditions and comorbidities to enable timely, deeper analysis into emerging signals from the surveillance system. The identifying details will be stored in a separate database to the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset. Only data for children up to their 18th birthday who have died is being requested. This may include health records for children who have died from 1st April 2019 (the start of the NCMD data collection) and were born and may have hospital admissions from the start of the data collections that NCMD will be linking to. For some of these, this may mean that the linkage will be on data going back to the early 2000s. For instance, for a 17-year-old child with an underlying condition who died in 2019, linking to their hospital admissions’ records going back to the time they were born in 2002 would contribute to improving the understanding of how their early years’ health experiences or maternal or pregnancy related risk factors may be related to their health outcomes later in life. Researchers from the NCMD department will analyse the Data for the purposes described above. The University of Bristol will be the sole processor of the linked data and only a small number of the NCMD analytical team will have access to the record level data that is supplied by NHS England for the purposes of linkage and analysis. The data processing will be only carried out by substantive NCMD employees who have all been appropriately trained in data protection and confidentiality. All staff are required to complete their mandatory information governance training as per the University of Bristol policies and procedures (a couple of training modules should be completed every year: GDPR Information Security training and GDPR Data Protection Essentials) as well as the NHS England Data Security Awareness Level 1 training. For the purposes of linkage, the data from NHS England will be held in a separate database on the same server where the NCMD data is stored (SQL Server). This is technically supported by QES, but no processing or analysis is carried out by QES as per the conditions of the QES subcontract with the University of Bristol.

Expected output

~~All outputs will be aggregated with small numbers suppressed in line with the HES analysis guide~~ The expected outputs of the processing will be: ~~1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:~~ a. Reports - the NCMD monthly reports to NHS England, and the NCMD commissioned annual and thematic reports (aggregate data only). NCMD is commissioned to publish 3 public facing reports annually: one annual report and 2 thematic reports (themes vary every year) as informed from the data in consultation with the wider programme stakeholders’ group and as required by NHS England. The stakeholders are the NCMD Programme Steering and Professional Advisory Groups. The terms of reference documents for both groups are available on the NCMD website - Governance - National Child Mortality Database. Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS England will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future. a. Reports - the NCMD weekly reports to NHS England, not publicly available and the NCMD commissioned annual and thematic reports (aggregate data only). NCMD is commissioned to publish 3 public facing reports annually: one annual report and 2 thematic reports, which will be on a different theme every year as informed from the data in consultation with the wider programme stakeholders group and as required by NHS England. The stakeholders are the NCMD Programme Steering and Professional Advisory Groups. The terms of reference documents for both groups are available from our website, and I add the links for each here; they both include the membership: ~~NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)~~ ~~NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf~~ Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS England will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future. [3 paragraphs unchanged] In the reports to NHS England from the real-time child mortality surveillance [25 words unchanged] shared with NHS England and are not available in the public domain. ~~The NCMD commissioned annual and thematic reports are public facing and only include aggregate data with small numbers supressed.~~ The dissemination activities will target an audience of researchers, scientists, innovative technology-focused organisations, research participants. Activities should also reach beyond the scientific community to engage with policy makers. The aim of the dissemination activities shall be two-fold: to enable the engagement with the scientific and policy-making communities / to ensure that knowledge developed by the research can benefit these communities. Dissemination channels: journals, workshops, webinars, social media, public reports, direct bilateral engagement using new and established relationships, industry newsletters, briefing documents, co-hosted events, open source frameworks, etc. The NCMD commissioned annual and thematic reports are public facing and only include aggregate data with small numbers supressed. Communication of results/outputs - The NCMD Programme employs a Senior Communications and Engagement Officer who leads on the NCMD’s stakeholders engagement and communications planning and activities. NCMD has a well established communications and stakeholders engagement strategy which ensures that any information about the programme, its findings and impact reaches all interested groups and the programme engages with these groups in knowledge-sharing and dialogue. A wide variety of communication channels are used, including the NCMD website (https://www.ncmd.info/about/) and newsletters (https://www.ncmd.info/newsletters/). NCMD also organises a series of free webinars (https://www.ncmd.info/webinars/) dedicated on different topics of interest to key stakeholders as well on the programme’s published reports. As an example, the first webinar organised by NCMD launched a “Call to Action” for professionals to provide COVID-19 specific data and was attended by over 100 child death review (CDR) professionals across England. The dissemination activities will target an audience of researchers, scientists, innovative technology-focused organisations, research participants. Activities should also reach beyond the scientific community to engage with policy makers. The aim of the dissemination activities shall be two-fold: to enable the engagement with the scientific and policy-making communities / to ensure that knowledge developed by the research can benefit these communities. Dissemination channels: journals, workshops, webinars, social media, public reports, direct bilateral engagement using new and established relationships, industry newsletters, briefing documents, co-hosted events, open source frameworks, etc. The NCMD Programme employs a Senior Communications and Engagement Officer who leads on the NCMD’s stakeholders engagement and communications planning and activities. NCMD have a well established communications and stakeholders engagement strategy which ensures that any information about the programme, its findings and impact reaches all interested groups and the programme engages with these groups in knowledge-sharing and dialogue. A wide variety of communication channels are used, including the NCMD website (https://www.ncmd.info/about/) and newsletters (https://www.ncmd.info/newsletters/). NCMD also organises a series of free webinars (https://www.ncmd.info/webinars/) dedicated on different topics of interest to key stakeholders as well on the programme’s published reports. [1 paragraph unchanged] As part of the NCMD real-time surveillance system, the reporting to NHS England and escalation from that by NHS England to government and the Scientific Advisory Group for Emergencies (SAGE) is currently ongoing. Exploitation of results/outputs - Increasingly, research can be about the development of algorithms, the testing and development of tools and new technologies. This may involve: the creation of evaluation environments for the assessment and validation of processes, tools and technologies; the development of a service offering; the creation of commercial exploitation pathways of outputs when these are tools, new processes and new technologies (during the lifetime of the project or beyond the project’s completion); further research and development in the same/similar context. Issues to explore include: ~~• Data and knowledge ownership~~ ~~• Data and knowledge management~~ ~~• Access rights~~ ~~• Open access~~ ~~• Rights usage~~ The NCMD child mortality surveillance system and the overall NCMD programme of work is data driven. The data quality assurance processes and national analysis carried out by NCMD on the information collated from the local child death review processes provides the environment for continuous evaluation of how the data collection works and what can be done to further improve it. This includes evaluation also of how the technical solution works, which for instance helps to identify how the wide range of different scenarios in data flows from the different reporting agencies may be impacting data quality. System changes e.g., new questions added to the data collection forms or changes in the structure and order of questions, go through a formal process of review, approval and user testing before they are released in the live database environment.

Expected measurable benefits

[2 paragraphs unchanged] The value of the statutory CDR data collection and NCMD national analysis ~~is even more~~ made significant impact during the COVID-19 pandemic as the results from the NCMD real-time child mortality surveillance system and the recommendations from the NCMD commissioned thematic reports ~~enable~~ enabled immediate actions to reduce child deaths and improve the health and wellbeing of children and families in England. More specifically, the benefits from linking with the NHSE records on all children who die, will have an impact in the following areas: ~~More specifically, the benefits from linking with the NHSD records on all children who die, will have an impact in the following areas:~~ 1.Health and social care government policies ~~1. Health and social care government policies~~ The data from the NCMD real-time surveillance of child mortality in England during the COVID-19 epidemic contributed to immediate learning and understanding of the impact of the epidemic on child mortality at a country level. The NCMD surveillance data informed the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and was used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools. The data from the NCMD real-time surveillance of child mortality in England during the COVID-19 epidemic aids immediate learning and understanding of the impact of the epidemic on child mortality at a country level. The NCMD surveillance data informs the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and is being used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools. By linking up information received from the child death review process notifications with the requested datasets specified is essential for completing and validating the NCMD data and ensuring the findings are representative of all child deaths in the country at given point in time. Linking up information received from the child death review process notifications with the data sourced from Civil Registration (Deaths) Data, Hospital Episodes Statistics, Maternity Services Data Set and Demographics is essential for completing and validating the NCMD data and ensuring the findings are representative of all child deaths in the country at given point in time. The benefits to health and social care also arise from the individual child death reviews, which include learning points and recommended actions for service improvements and address any potentially avoidable modifiable and contributory factors related to deaths in the future. Linking up with NHSE records will ensure the information is as complete and accurate as possible so more meaningful analysis can be produced to better inform service improvement actions and policies. The benefits to health and social care also arise from the individual child death reviews, which include learning points and recommended actions for service improvements and address any potentially avoidable modifiable and contributory factors related to deaths in the future. For instance, NCMD is currently supporting with evidence the impact of trauma deaths and violence and violence reduction is one of the ten priorities of the health and care vision for London. An increase in trauma deaths and violence is a potential emerging consequence from the indirect impact of the pandemic on the society. Linking up with NHSD records will ensure the information is as complete and accurate as possible so more meaningful analysis can be produced to better inform service improvement actions and policies. [1 paragraph unchanged] The information collated from all the child deaths reviewed may identify themes [145 words unchanged] but not limited to healthcare) and analysing good practice where it exists. This is particularly important and the need for it even more immediate in the context of the COVID-19 pandemic as there is substantial evidence now that the pandemic is disproportionally affecting different ethnic groups and the more deprived population. Linking up with the ~~NHSD~~ NHSE records will improve the NCMD data completeness allowing for more reliable analysis [11 words unchanged] to reducing health inequalities and the number of child deaths in future. [1 paragraph unchanged] There are also benefits for the NHS. NCMD data ~~provides~~ has provided information on how COVID-19 ~~may be impacting the~~ impacted on extremely vulnerable ~~children.~~ children, using previously linked data. The analysis of the NCMD data contributes to the development of paediatric [8 words unchanged] There are additional benefits from analysing the information from the reviews of ~~asthma~~ deaths due to asthma, children with life-limiting conditions, children with a learning disability, and other chronic conditions deaths to identify any modifiable factors related to [60 words unchanged] to support the real-time child mortality surveillance and reporting to NHS England. ~~Children with underlying conditions may be more vulnerable to COVID-19, and this makes the need for data linkage even more immediate.~~ NCMD is also currently working on a thematic report aiming to quantify the impact of perinatal events on all-cause child mortality, and their contribution to longer term childhood mortality as the children grow; and in particular the impact of the COVID pandemic on this. The findings and learning from the report will inform what further policies and interventions may be required to reduce the number of children who die or are left severely disabled as a result of events occurring during the perinatal period, aligning with this objective in the NHS Long Term Plan. The report will also present emerging themes on the indirect impact of the Covid-19 pandemic on perinatal and longer-term mortality of children surviving significant perinatal events. NCMD is also currently working on a thematic report aiming to identify the common characteristics of children and young people, up to the age of 18, who die and whose parents are consanguineous. The findings and learning from the report will provide insights for policymakers, commissioners and those providing services for children and young people and enhance the existing evidence base to inform the NHSE national strategy and support ongoing and future interventions for these families.. Similarly, linkage will support future thematic reports that could potentially include deaths due to cancer, health inequalities, abuse or neglect, or re-visiting previous topics such as suicide, deaths of children with life-limiting conditions, or asthma and anaphylaxis deaths. The requested datasets will complement the information held on NCMD to support this reporting and meet the overall aim of NCMD which is improve the knowledge and understanding of why children are dying. The Medicines dispensed in Primary Care dataset will enable richer analysis on risk analysis, such as the number of reliver/preventer inhalers prescribed for children who died due to asthma, as described in the recent Asthma and Anaphylaxis report where this linkage was used (see ncmd.info/asthma). Similarly, data from NCRAS will support further work analysing deaths due to cancer, and future thematic reports. The dataset will allow for more comprehensive cancer diagnostic data over the child’s life, complimenting the NCMD data, to generate better insights and reporting. Community services data set will also compliment NCMD data and further analysis can then be undertaken to see which services were accessed prior to the child’s death and at what point in their life.

Benefits reported

[6 paragraphs unchanged] The NCMD has recently contributed to three All-Party Parliamentary Groups, and the programmes report on Sudden Unexpected Death in Childhood (SUDIC) report was debated in ~~parliament~~ parliament. ~~***COVID-19***~~ During the COVID-19 pandemic, the data from the NCMD provided real-time surveillance of child mortality in England, and aided immediate learning and understanding of the impact of the pandemic on child mortality. The NCMD surveillance data informed the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and findings from the study were used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools. NCMD data provided information on how COVID-19 may have impacted extremely vulnerable children. The analysis of the NCMD data contributed to the development of paediatric early warning scores for managing rapidly deteriorating children.

DARS-NIC-331142-P5K6M-v4.4 10 January 2025 to 9 January 2026

Title: National Child Mortality Database (NCMD)
Commercial: No
Sublicensing: No
Datasets: 7
Files released: 0

Datasets: Civil Registrations of Death - Secondary Care Cut; Emergency Care Data Set (ECDS); Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); Maternity Services Data Set (MSDS) v1.5; Mental Health Services Data Set (MHSDS)

What changed from DARS-NIC-331142-P5K6M-v3.4

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

Fields changed from DARS-NIC-331142-P5K6M-v3.4
Field	Was	Became
Start date	~~2024-07-05~~	2025-01-10
End date	~~2025-01-31~~	2026-01-09

Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.

Objective for processing

NHS England and HQIP are joint data controllers of the NCMD data. The University of Bristol and QES are data processors of the NCMD data. The NCMD partners – the University of Oxford and UCL Partners – each lead on different strands of the NCMD main contract of work e.g., on public and patient involvement and on quality improvement of the local mortality review processes respectively. University of Oxford and UCL do not require direct access to NCMD data or NHS England data for processing and analysis in performing their roles as such are not considered data controller nor data processor for the data requested under this agreement.

NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.

NCMD’s national data collection started on 1st April 2019 and includes information about children who have died since 1st April 2019 as well as information about those who died prior to 1st April 2019 where their death review process was still ongoing on that date.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Develop a sustainable model after the lifetime of the project.

NCMD provides a unique opportunity to accelerate understanding of how COVID-19 is impacting children and identify opportunities for intervention. The knowledge and evidence base about how COVID-19 will threaten the lives of new-born babies, infants and children is limited and more information is needed on:

• The impact of chronic morbidities in children on their risk of dying due to COVID-19

• Sudden unexpected death in infancy (SUDI)

• Babies born preterm, where the mother had severe COVID-19.

At the start of the COVID-19 epidemic, the NCMD Programme was tasked by NHS England to set up a child mortality surveillance system. The purpose is to provide the means for real time surveillance on child mortality in England to inform NHS England and the Department of Health and Social Care (DHSC).

This system is helping to reduce the uncertainties around child deaths related to COVID-19 (direct and indirect), which in turn is helping to inform agency decision-making to limit the direct and indirect impacts of the epidemic.

Through daily data linkage with Public Health England (PHE) virology database, NCMD has the most up to date information on all child deaths (including deaths outside hospital) with positive COVID-19 test results. NCMD provides daily and weekly child mortality figures and weekly trend reports to NHS England and to the National Clinical Director for Children and Young People and intelligence from these reports is feeding up to the National Medical Director and the Chief Medical Officer.

More recently, NHS England have requested NCMD to carry out further, deeper analysis on neonatal deaths as part of the real-time surveillance of child death in the pandemic. Neonatal deaths make up one third of all child mortality (below 18 years) and deaths in maternity/neonatal units form the largest proportion of child deaths.

HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:

Article 6 (1) (e) 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. The overall aim of the NCMD programme is to drive improvements in the quality of health and social care for children in England and to help reduce premature mortality. The design and outputs from this programme will provide the data and intelligence to enable strategic focus on the most significant causes and contributory factors in child mortality in England in the medium and long term. They stimulate quality improvement and support organisations to find out if healthcare is being provided in line with nationally agreed standards. This processing is therefore undertaken in the public interest.

HQIP rely on Article 9 (2)(i) (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 the NCMD programme aims 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.

Expected output

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

1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:

a. Reports - the NCMD weekly reports to NHS England, not publicly available and the NCMD commissioned annual and thematic reports (aggregate data only). NCMD is commissioned to publish 3 public facing reports annually: one annual report and 2 thematic reports, which will be on a different theme every year as informed from the data in consultation with the wider programme stakeholders group and as required by NHS England. The stakeholders are the NCMD Programme Steering and Professional Advisory Groups. The terms of reference documents for both groups are available from our website, and I add the links for each here; they both include the membership:

NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)

NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf

Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS England will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future.

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

In the reports to NHS England from the real-time child mortality surveillance system only aggregate data by category of death is included. There may be small numbers included for some of the categories. These reports are only shared with NHS England and are not available in the public domain. The NCMD commissioned annual and thematic reports are public facing and only include aggregate data with small numbers supressed.

The dissemination activities will target an audience of researchers, scientists, innovative technology-focused organisations, research participants. Activities should also reach beyond the scientific community to engage with policy makers. The aim of the dissemination activities shall be two-fold: to enable the engagement with the scientific and policy-making communities / to ensure that knowledge developed by the research can benefit these communities. Dissemination channels: journals, workshops, webinars, social media, public reports, direct bilateral engagement using new and established relationships, industry newsletters, briefing documents, co-hosted events, open source frameworks, etc.

Communication of results/outputs - The NCMD Programme employs a Senior Communications and Engagement Officer who leads on the NCMD’s stakeholders engagement and communications planning and activities. NCMD has a well established communications and stakeholders engagement strategy which ensures that any information about the programme, its findings and impact reaches all interested groups and the programme engages with these groups in knowledge-sharing and dialogue. A wide variety of communication channels are used, including the NCMD website (https://www.ncmd.info/about/) and newsletters (https://www.ncmd.info/newsletters/). NCMD also organises a series of free webinars (https://www.ncmd.info/webinars/) dedicated on different topics of interest to key stakeholders as well on the programme’s published reports. As an example, the first webinar organised by NCMD launched a “Call to Action” for professionals to provide COVID-19 specific data and was attended by over 100 child death review (CDR) professionals across England.

As part of the NCMD real-time surveillance system, the reporting to NHS England and escalation from that by NHS England to government and the Scientific Advisory Group for Emergencies (SAGE) is currently ongoing.

Exploitation of results/outputs - Increasingly, research can be about the development of algorithms, the testing and development of tools and new technologies. This may involve: the creation of evaluation environments for the assessment and validation of processes, tools and technologies; the development of a service offering; the creation of commercial exploitation pathways of outputs when these are tools, new processes and new technologies (during the lifetime of the project or beyond the project’s completion); further research and development in the same/similar context. Issues to explore include:

• Data and knowledge ownership

• Data and knowledge management

• Access rights

• Open access

• Rights usage

The NCMD child mortality surveillance system and the overall NCMD programme of work is data driven. The data quality assurance processes and national analysis carried out by NCMD on the information collated from the local child death review processes provides the environment for continuous evaluation of how the data collection works and what can be done to further improve it. This includes evaluation also of how the technical solution works, which for instance helps to identify how the wide range of different scenarios in data flows from the different reporting agencies may be impacting data quality. System changes e.g., new questions added to the data collection forms or changes in the structure and order of questions, go through a formal process of review, approval and user testing before they are released in the live database environment.

Benefits reported

Throughout recent years the NCMD have contributed to policy change and has aided in the publication of guidance and safety notices for parents and healthcare professionals.

• Flagged the need for earlier detection and identification of Strep A

• Identified children living in urban areas have had a higher risk of dying from infection, with the risk of dying from infection being higher in the most deprived neighbourhoods

• Shown that 98% of Sudden Unexpected Death in Childhood (SUDIC) cases had at least one clinical, statutory, family, social or environmental vulnerability factors associated with them

The NCMD has recently contributed to three All-Party Parliamentary Groups, and the programmes report on Sudden Unexpected Death in Childhood (SUDIC) report was debated in parliament

***COVID-19***

During the COVID-19 pandemic, the data from the NCMD provided real-time surveillance of child mortality in England, and aided immediate learning and understanding of the impact of the pandemic on child mortality.

The NCMD surveillance data informed the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and findings from the study were used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools.

NCMD data provided information on how COVID-19 may have impacted extremely vulnerable children. The analysis of the NCMD data contributed to the development of paediatric early warning scores for managing rapidly deteriorating children.

DARS-NIC-331142-P5K6M-v3.4 5 July 2024 to 31 January 2025

Title: National Child Mortality Database (NCMD)
Commercial: No
Sublicensing: No
Datasets: 7
Files released: 1

What changed from DARS-NIC-331142-P5K6M-v2.10

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

Fields changed from DARS-NIC-331142-P5K6M-v2.10
Field	Was	Became
Title	~~National Child Mortality Database (NCMD) request for mortality data (COVID-19)~~	National Child Mortality Database (NCMD)
Start date	~~2023-07-14~~	2024-07-05
End date	~~2024-01-13~~	2025-01-31
Civil Registrations of Death - Secondary Care Cut: legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
Emergency Care Data Set (ECDS): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
Hospital Episode Statistics Outpatients (HES OP): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
MSDS (Maternity Services Data Set) v1.5: legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)
Mental Health Services Data Set (MHSDS): legal basis	~~CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002~~	CV19: Regulation 3 (4) of the Health Service (Control of Patient Information) Regulations 2002; Health and Social Care Act 2012 - s261(5)(d)

Processing activities

No further data will flow under this iteration of the ~~agreement.~~ Data Sharing Agreement. ~~This is an extension that permits continued retention of the data only, and does not permit any other processing of the data.~~ [24 paragraphs unchanged]

Benefits reported

It is anticipated that linking with the underlying conditions data from the standardised and coded routinely collected data sets will complement the child death records and will allow more complete analysis to be carried out by the NCMD team (e.g. on the risks associated with underlying diseases and causes of death). For instance, it will allow for a deeper analysis to improve understanding of vulnerabilities related to exposure to a COVID-19 infection. The NCMD team have not been able to carry out these analyses as the data was not received in full by the end of the current DSA. Throughout recent years the NCMD have contributed to policy change and has aided in the publication of guidance and safety notices for parents and healthcare professionals. In addition to this, the findings of the NCMD have added to the current understanding deaths in children and young people, and the need for preventative healthcare measures. Specifically, the NCMD has: • Flagged the need for earlier detection and identification of Strep A • Identified children living in urban areas have had a higher risk of dying from infection, with the risk of dying from infection being higher in the most deprived neighbourhoods • Shown that 98% of Sudden Unexpected Death in Childhood (SUDIC) cases had at least one clinical, statutory, family, social or environmental vulnerability factors associated with them • Identified that the most commonly occurring family or social vulnerability factors, identified in over half of cases, are smoking in either parent (62.5%), mother smoking (51.6%), father smoking (51.6%), poor mental health in either parent (56.2%) and poor mental health in mother (50.0%). Over a third of cases identified previous domestic abuse (not directly related to the death) (40.6%) and smoking in both parents (39.1%). Drug misuse and alcohol misuse have been identified as separate issues; recorded for either parent they are identified in over a quarter of cases (26.6% and 26.6% respectively). The NCMD has recently contributed to three All-Party Parliamentary Groups, and the programmes report on Sudden Unexpected Death in Childhood (SUDIC) report was debated in parliament ***COVID-19*** During the COVID-19 pandemic, the data from the NCMD provided real-time surveillance of child mortality in England, and aided immediate learning and understanding of the impact of the pandemic on child mortality. The NCMD surveillance data informed the Joint Committee on Vaccination and Immunisation (JCVI) and the Scientific Advisory Group for Emergencies (SAGE) and findings from the study were used by the Chief Medical Officer at Education Select Committee meetings informing decisions on children returning to schools. NCMD data provided information on how COVID-19 may have impacted extremely vulnerable children. The analysis of the NCMD data contributed to the development of paediatric early warning scores for managing rapidly deteriorating children.

Changed only in punctuation, spacing or capitalisation: Expected measurable benefits, Expected output, Objective for processing.

Objective for processing

NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Develop a sustainable model after the lifetime of the project.

• The impact of chronic morbidities in children on their risk of dying due to COVID-19

• Sudden unexpected death in infancy (SUDI)

• Babies born preterm, where the mother had severe COVID-19.

HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:

Expected output

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

1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:

NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)

NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

• Data and knowledge ownership

• Data and knowledge management

• Access rights

• Open access

• Rights usage

Benefits reported

Throughout recent years the NCMD have contributed to policy change and has aided in the publication of guidance and safety notices for parents and healthcare professionals.

• Flagged the need for earlier detection and identification of Strep A

• Identified children living in urban areas have had a higher risk of dying from infection, with the risk of dying from infection being higher in the most deprived neighbourhoods

• Shown that 98% of Sudden Unexpected Death in Childhood (SUDIC) cases had at least one clinical, statutory, family, social or environmental vulnerability factors associated with them

The NCMD has recently contributed to three All-Party Parliamentary Groups, and the programmes report on Sudden Unexpected Death in Childhood (SUDIC) report was debated in parliament

***COVID-19***

DARS-NIC-331142-P5K6M-v2.10 14 July 2023 to 13 January 2024

Title: National Child Mortality Database (NCMD) request for mortality data (COVID-19)
Commercial: No
Sublicensing: No
Datasets: 7
Files released: 0

What changed from DARS-NIC-331142-P5K6M-v1.6

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

Fields changed from DARS-NIC-331142-P5K6M-v1.6
Field	Was	Became
Start date	~~2022-12-09~~	2023-07-14
End date	~~2023-06-08~~	2024-01-13

Datasets: + Mental Health Services Data Set (MHSDS)

Objective for processing

[2 paragraphs unchanged] NHS England and HQIP are joint data controllers of the NCMD data. [57 words unchanged] and UCL do not require direct access to NCMD data or NHS ~~Digital~~ England data for processing and analysis in performing their roles as such are not considered data controller nor data processor for the data requested under this agreement. [21 paragraphs unchanged]

Processing activities

[1 paragraph unchanged] This is an extension that permits continued retention of the data only, and does not permit any other processing of the data. [1 paragraph unchanged] There will be no data linkage undertaken with NHS ~~digital~~ England data provided under this agreement that is not already noted in the agreement. NHS ~~Digital~~ England data will only be used for the purposes described in this agreement. [1 paragraph unchanged] The child death review process collects information on and identifies the causes [19 words unchanged] it is supplied to NCMD for analysis. Linking up with the NHS ~~Digital's~~ England's mortality data sets will allow NCMD to have access to the ICD-10 [20 words unchanged] to enable analyses and accurate reporting. The mortality data provided by NHS ~~Digital~~ England is linked to the data held by NCMD so analysis can take place based on age (gestation), sex, ethnicity and categories of death. [1 paragraph unchanged] It is expected there may be registered deaths from the NHS ~~Digital~~ England feeds that have not as yet been notified to NCMD by the [16 words unchanged] most up to date is available for the child mortality surveillance system. [8 paragraphs unchanged] NHS ~~Digital~~ England will run a cohort of everyone who has died under 18 between [7 words unchanged] Mortality and MSDS, then flow data back to the University of Bristol. Before the case list is sent to PHE, all cases are being [20 words unchanged] cause of death information will be used. No data (supplied by NHS ~~Digital)~~ England) is processed outside of the NCMD Programme (based at the University of Bristol) and the SQL database supported by QES is used for the linkage. There will be no flow of data to NHS ~~Digital.~~ England. The data linkage with the following NHS ~~Digital~~ England controlled datasets – [5 paragraphs unchanged] The University of Bristol will be the sole processor of the linked [12 words unchanged] have access to the record level data that is supplied by NHS ~~Digital~~ England for the purposes of linkage and analysis. The data processing will be [50 words unchanged] Security training and GDPR Data Protection Essentials) as well as the NHS ~~Digital~~ England Data Security Awareness Level 1 training. For the purposes of linkage, the data from NHS ~~Digital~~ England will be held in a separate database on the same server where [24 words unchanged] per the conditions of the QES subcontract with the University of Bristol.

Expected output

[5 paragraphs unchanged] Only aggregate numbers with small numbers suppressed in line with the HES [8 words unchanged] these reports. Linking the NCMD dataset with the records held at NHS ~~Digital~~ England will ensure the national data is as complete as accurate to allow [19 words unchanged] child deaths and to reduce the number of children dying in future. [15 paragraphs unchanged]

Expected measurable benefits

[11 paragraphs unchanged] There are also benefits for the NHS. NCMD data provides information on [71 words unchanged] comorbidities for all children that die from the records held at NHS ~~Digital~~ England will be crucial to achieve this as these nationally standardised and quality [39 words unchanged] COVID-19, and this makes the need for data linkage even more immediate. [1 paragraph unchanged]

Unchanged: Benefits reported.

Objective for processing

NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Develop a sustainable model after the lifetime of the project.

• The impact of chronic morbidities in children on their risk of dying due to COVID-19

• Sudden unexpected death in infancy (SUDI)

• Babies born preterm, where the mother had severe COVID-19.

HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:

Expected output

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

1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:

NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)

NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

• Data and knowledge ownership

• Data and knowledge management

• Access rights

• Open access

• Rights usage

Benefits reported

DARS-NIC-331142-P5K6M-v1.6 9 December 2022 to 8 June 2023

Title: National Child Mortality Database (NCMD) request for mortality data (COVID-19)
Commercial: No
Sublicensing: No
Datasets: 6
Files released: 0

What changed from DARS-NIC-331142-P5K6M-v0.11

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

Fields changed from DARS-NIC-331142-P5K6M-v0.11
Field	Was	Became
Start date	~~2021-11-18~~	2022-12-09
End date	~~2022-11-17~~	2023-06-08

Processing activities

No further data will flow under this iteration of the agreement. [24 paragraphs unchanged]

Benefits reported

~~Yielded Benefits is not a requirement for new applications.~~ It is anticipated that linking with the underlying conditions data from the standardised and coded routinely collected data sets will complement the child death records and will allow more complete analysis to be carried out by the NCMD team (e.g. on the risks associated with underlying diseases and causes of death). For instance, it will allow for a deeper analysis to improve understanding of vulnerabilities related to exposure to a COVID-19 infection. The NCMD team have not been able to carry out these analyses as the data was not received in full by the end of the current DSA.

Unchanged: Objective for processing, Expected output, Expected measurable benefits.

Objective for processing

NHS England and HQIP are joint data controllers of the NCMD data. The University of Bristol and QES are data processors of the NCMD data. The NCMD partners – the University of Oxford and UCL Partners – each lead on different strands of the NCMD main contract of work e.g., on public and patient involvement and on quality improvement of the local mortality review processes respectively. University of Oxford and UCL do not require direct access to NCMD data or NHS Digital data for processing and analysis in performing their roles as such are not considered data controller nor data processor for the data requested under this agreement.

NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Develop a sustainable model after the lifetime of the project.

• The impact of chronic morbidities in children on their risk of dying due to COVID-19

• Sudden unexpected death in infancy (SUDI)

• Babies born preterm, where the mother had severe COVID-19.

HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:

Expected output

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

1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:

NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)

NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf

Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS Digital will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future.

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

• Data and knowledge ownership

• Data and knowledge management

• Access rights

• Open access

• Rights usage

Benefits reported

DARS-NIC-331142-P5K6M-v0.11 18 November 2021 to 17 November 2022

Title: National Child Mortality Database (NCMD) request for mortality data (COVID-19)
Commercial: No
Sublicensing: No
Datasets: 6
Files released: 133

Objective for processing

NHS England and HQIP are joint data controllers of the NCMD data. The University of Bristol and QES are data processors of the NCMD data. The NCMD partners – the University of Oxford and UCL Partners – each lead on different strands of the NCMD main contract of work e.g., on public and patient involvement and on quality improvement of the local mortality review processes respectively. University of Oxford and UCL do not require direct access to NCMD data or NHS Digital data for processing and analysis in performing their roles as such are not considered data controller nor data processor for the data requested under this agreement.

NCMD do not hold data relating to stillbirths or legal terminations of pregnancy.

The aims of the NCMD Programme are to:

• Capture, analyse and disseminate appropriate data and learning from child death reviews

• Drive the quality of child death review at every stage through bench-marking and quality improvement (QI) methodology

• Develop a sustainable model after the lifetime of the project.

• The impact of chronic morbidities in children on their risk of dying due to COVID-19

• Sudden unexpected death in infancy (SUDI)

• Babies born preterm, where the mother had severe COVID-19.

HQIP, as controller, has determined the most appropriate legal basis for the NCMD Programme is:

Expected output

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

1. The following is hoped to be produced as a result of the data processing. This may include (but is not limited to) the following:

NCMD Professional Advisory Group (PAG) - PPPI-Advisory-Group-TOR-Version-1.3-02.09.19.pdf (ncmd.info)

NCMD Steering Group – NCMD-Programme-Steering-Group-TOR_Version-1.5.pdf

Only aggregate numbers with small numbers suppressed in line with the HES analysis guideline of child deaths are included in these reports. Linking the NCMD dataset with the records held at NHS Digital will ensure the national data is as complete as accurate to allow for reliable reporting of child deaths at country level to meet the Programme's overall objective - to learn from child deaths and to reduce the number of children dying in future.

b. Submissions to peer reviewed journals - the Lancet, the BMJ, Archives of Disease in Childhood

d. Conferences - findings from these reports will be presented at conferences (e.g. the Royal College of Paediatrics and Child Health)

• Data and knowledge ownership

• Data and knowledge management

• Access rights

• Open access

• Rights usage

Benefits reported

Yielded Benefits is not a requirement for new applications.

Register history

When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.

January 2022 — first listed.
1 version: DARS-NIC-331142-P5K6M-v0.11
January 2023
1 version added: DARS-NIC-331142-P5K6M-v1.6
September 2023
1 version added: DARS-NIC-331142-P5K6M-v2.10
October 2024
1 version added: DARS-NIC-331142-P5K6M-v3.4
February 2025
1 version added: DARS-NIC-331142-P5K6M-v4.4
October 2025
1 version added: DARS-NIC-331142-P5K6M-v5.6

Renamed Data controllers: NHS England (Quarry House) now named NHS England. Not counted as a change.

Cite this page

NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-331142-P5K6M, “National Child Mortality Database (NCMD)”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-331142-p5k6m/ (accessed [date]).

This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.

Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-331142-P5K6M to see the original rows.