NCMD publishes first annual report
10 October 2019
The National Child Mortality Database (NCMD) Programme, which was established on 1 April 2018 with the aim of reducing premature mortality by collecting and analysing data on all deaths in children in England, aged between birth and their 18th birthday, has published its first annual report [10 Oct 2019].
The four-year project, commissioned by Healthcare Quality Improvement Partnership (HQIP) on behalf of NHS England, is led by the University of Bristol, in collaboration with the National Perinatal Epidemiology Unit (NPEU) at University of Oxford, UCL Partners and the software company QES. In addition, the programme benefits from the involvement of the NCMD charity partners: The Lullaby Trust, Sands and Child Bereavement UK.
The research team work closely with Child Death Overview Panels (CDOPs), which are part of the Child Death Review process, and review all child deaths in England. However, the way the CDR process operated across the country varied significantly, both in terms of what data was collected and how deaths were reviewed. In addition, there was no national collation or analysis of the CDOPs information. This meant that the understanding of how and why children die, and what might be done to reduce the number of children dying in the future, has, to date, been very limited.
The NCMD national data collection and analysis system is the first of its kind anywhere in the world to record comprehensive data, standardised across the country, on the circumstances of children’s deaths. The data will be used to inform strategic improvements in health and social care for children in England and to help health and social care providers to learn about how they can reduce child deaths.
- Governance and operational structures were developed ensuring bereaved families and professionals who care for children are fully represented at the very core of this programme.
- A communications plan was developed, which focused on effective engagement through the NCMD website, social media and presentations at national events, such as, NHS England implementation events and webinars, the National Network of Child Death Overview Panels (NNCDOP) Annual Conference and the Annual Conference of the Royal College of Paediatrics and Child Health. This has involved raising awareness about NCMD to CDR partners and specialist professional organisations.
- A legal basis for collecting and holding data in NCMD was established.
- A set of supplementary reporting form questions was updated and expanded to collect information from those people who provided services to the child and their family during life and after death.
- The NCMD web-based platform was designed and built. A pilot was carried out to test the system, which resulted in the provision of valuable feedback from CDOPs that enabled appropriate adjustments to be made before going live. The team worked with members of the NCMD Steering Group, Parent, Patient and Public Involvement Group, Professional Advisory Group and CDOPs to ensure that when the system was launched it met the needs of all stakeholders.
- Data linkage collaboration was set up with the Perinatal Mortality Review Tool (PMRT), with the aim to support professionals by reducing the number of forms they need to complete to provide information for both data collection systems. Progress was made in mapping both national data sets and setting up the principles and plans for the technical work required.
- An NCMD pilot phase was completed where CDOPs tested NCMD by entering information into the system and providing feedback on what works and what needed changing.
- After the successful completion of the pilot, the NCMD system started data collection on 1st April 2019, as planned.
A set of milestones, which focus on driving improvements in the collection, completeness and quality of the information feeding into NCMD to build a national resource of information from which meaningful conclusions and learning can be drawn, were achieved during the first 6-months since the national data collection began on 1 April 2019:
- A NCMD Quality Improvement plan was developed with a focus, in the first year of data collection, to drive improvements in data completeness and quality along with initiatives to support CDOP offices in collecting the information and recording it correctly on the online systems.
- Quality Improvements webinars are being organised, open to all CDOPs, as one of the mechanisms for direct support from the NCMD team and to receive feedback from CDOPs on their experiences using the database and the new data collection fields.
- Regular bulletins and newsletters are published on the NCMD website detailing programme progress and providing guidance to CDR professionals on database development, updated data fields and quality improvement requirements and recommendations.
- Individual regular updates on data quality indicators will also be sent to CDOPs via secure email.
Dr Karen Luyt, the NCMD Programme Lead from Bristol Medical School at the University of Bristol, said: “This is our first NCMD annual report, which covers the first year of programme work, which involved establishing the governance structures of the programme as well as the technical development of the data collection and analysis system itself. We began establishing our network of collaborators and partners, which is continuously growing. We are privileged to be part of a community of professionals, bereaved families and members of the public who with their expertise, knowledge and passion are central in driving this work forward so it can achieve its main aim to improve young lives.”
Sylvia Stoianova, NCMD Manager from Bristol Medical School at the University of Bristol, added: “We are very grateful for the commitment of everyone involved in the process. There has been a significant uptake in data submission by the CDOP offices across England. Without the data collated during the CDR and CDOP processes feeding into the national system, there will not be national analysis of information and our knowledge, understanding and learning to improve young lives will remain limited.”
The NCMD second annual report will include analysis of the information received during the first year of data collection and key recommendations and is planned to be published towards the end of 2020.
The NCMD's first annual report is available to download here.