Our data

The National Child Mortality Database (NCMD) analyses data on behalf of child death review partners in England. The child death review partners for any local authority consist of the local authority itself and any clinical commissioning groups that fall within that authority.

The data the NCMD analyses is collected from child death overview panels, groups of professionals who are responsible for carrying out the child death review process on behalf of the child death review partners. 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, the NCMD collects data on all children in England who die before their 18th birthday. We do not hold data relating to stillbirths unless they are unattended by a healthcare professional and occur outside of hospital, or legal terminations of pregnancy.

The 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 some children who died prior to 1st April 2019 where the review of their death was still ongoing on that date.

How we collect data

Personal data on the child that died and any significant person in the child’s life is sent to the local child death overview panel from all agencies who had contact with the child during their life, or after their death. The child death overview panel then enters the data into the NCMD, either manually through a secure web portal, or automatically through a web-based application programming interface.

At the NCMD we store information on a secure web-based platform that has been built especially for this purpose. This platform has been rigorously tested and meets the requirements for confidential information set by NHS England (it can only be accessed by those with a unique username and password on a ‘need to know’ basis). All information is stored on this secured and encrypted database as well as secured and protected servers, and no personal or confidential information is kept on paper records.

The NCMD analyses and ensures the quality of the data derived from the database and feeds back any learning in a timely and accurate way to inform the practice of all professionals with a responsibility to children. Find out more about how we keep our data safe and secure by reading our Privacy Notice (which also contains a data flow diagram).

Data quality and completeness

The National Child Mortality Database (NCMD) is dependent on accurate data entry by the 58 regional Child Death Overview Panels (CDOPs) in England. Data on child deaths are collected via CDOPs using a set of statutory forms including the child death notification form, reporting form, and supplementary reporting forms. They enter the data into one of two online platforms (eCDOP or NCMD portal) on an ongoing basis, which then flows into the NCMD.

It is noted in Working Together (2018) guidance that there is a responsibility on registrars of deaths to notify CDOPs of all deaths of children under 18 years of age, normally resident in England, to ensure that CDOPs know about all deaths of children in their area. It is important that CDOPs regularly cross-reference their data with local registrars to provide assurance that all child deaths are being reported and reviewed.

Through appropriate data management, we strive to maintain and continuously improve data quality.

How do we ensure data quality?

There are some basic validation rules within the data collection systems at the point of data entry to stop as many errors as possible at the point of data entry (e.g., only valid NHS numbers can be entered) and these continue to be deployed as appropriate. Regular database queries are executed to identify any key issues with data accuracy, such as checking for duplicate entries or date of birth/date of death errors causing incorrect age calculation. Such errors, along with any ad hoc data quality issues discovered are fed back to CDOPs to correct the data at the source. Vigilance and scrutiny of all staff processing and analysing data is maintained, and additional data quality checks on specific analysis are conducted.

Quarterly data quality monitoring reports and annual regional reports are distributed to CDOPs, which include statistics on data completeness and timeliness. These reports serve as a prompt for CDOPs to check data quality and improve completeness, and facilitate communication between CDOPs and NCMD to ensure data accuracy. In addition, regular key field data completeness extracts are sent to each CDOP, identifying the exact incomplete field (e.g., gestational age) in each case, for the CDOP to action.

At the end of each reporting year NCMD contact all CDOPs to confirm the number of deaths in each area, to ensure all deaths are accounted for within the national database and in line with local records, with any discrepancies investigated and resolved.

How do we ensure the quality of data outputs and analyses?

Data are processed and analysed for the publication of thematic reports, data releases, academic papers and responding to data requests, in addition to routine reporting to CDOPs/ICBs. All outputs are quality assured and verified by at least one other member of the NCMD team before release or publication. Analyses are checked for unusual patterns, duplication, consistency and accuracy.

Further information and complaints

For information about the data the NCMD holds or data security, please contact the team.

Individuals have a right to complain to the Information Commissioners Office (ICO) if they think there is a problem with the way the NCMD is handling their data. The ICO is the UK’s independent authority set up to uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals.

More from this section: