Data security

NCMD’s C-A-R-E pledge to bereaved families: Your data will be used only for our core purpose of learning lessons to improve and save lives 

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 born in England who die before their 18th birthday. We do not hold data relating to stillbirths 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.

The process

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).

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.

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