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Data linkage

Putting together the data jigsaw: linking national administrative data on children and young people with SEND.

"Data collection in the current system is inconsistent: we do not always collect the right information, at the right time, in a way that enables local systems and leadership to respond to local needs before it is too late." (SEND Review, HMG 2022)

It is difficult for local services to map the number and needs of children and young people with special educational needs and disabilities to identify trends, gaps in provision and outcomes, due to the different language, definitions, purpose and scope of health, education and social care datasets, as well as barriers to sharing data between agencies.[1]

A small team of academics, paediatricians, parent-carers and service leads in Sunderland and South Tyneside secured funding for two projects of national significance, to link health, education and social care data on children and young people with SEND:

  • The LifeStart project, funded by the Local Data Accelerator Fund and commissioned by Together for Children, exploring the needs, pathways, risk and protective factors of children and young people excluded from school. A multi-agency live data platform is being developed to inform local decision-making and joint commissioning in future.
  • The jointly funded project by True Colours Trust and NIHR, School of Public Health Cross Cutting Data exploring how the needs of children and young people with learning disabilities/difficulties are identified and met by health, education and social care. The research team will also publish a resource documenting ‘best practice’ in linking health, social care and education data, to help other local areas to link their data.

Data linkage policy engagement – UKRI-funded, January to July 2023

In December 2022, members of the University of Sunderland research team were awarded funding from the UKRI Policy Support fund to help “maximise the policy impact of Sarah Martin-Denham's data linkage projects, informing national policy development on linking children’s data.” A programme of rapid research and policy engagement is underway, including:

  • An FOI to local authorities and integrated care boards across England to identify the extent of data linkage of children and young people’s data at the local level;
  • Interviews to explore barriers to progress experienced by local areas linking data on children and young people with SEND, enabling factors and outcomes;
  • Discussions with officials in the key policy teams to explore barriers to data linkage, opportunities and what would help, in terms of outputs from this project.
  • Synthesising learning from the two Sunderland data linkage projects on how we have been able to overcome obstacles to data linkage and emerging learning.

Emerging findings were shared at a policy workshop in Westminster on 23 May, slides and notes are shown below. Our first policy briefing on data linkage by local authorities in England was published to coincide with this.

[workshop slides: SEND -Datalinkage23May2023] sent as attachment

[workshop notes: SEND data linkage workshop notes -to share] sent as attachment

[FOI briefing one] sent as attachment

Local area research is on-going and analysis of ICB responses to our FOI, with two more policy briefings due to be published in the Summer/early Autumn 2023.

Further information

Contact Dr Sarah Martin Denham: sarah.denham@sunderland.ac.uk.

Research team

Lead Investigator: Dr Sarah Martin Denham

Co Investigators: Dr Karen Horridge, Professor Lorna Fraser, Dr Dougal Hargreaves

National Network lead: Anne Pinney

Research Coordinator: Nathan Scott

[1] Pinney A. Understanding the needs of disabled children with complex needs or life-limiting conditions. London: Council for Disabled Children/True Colours Trust, 2017