Development of a research-ready dataset linking data on children and young people in London held by Local Authorities and healthcare providers
Lead Research Organisation:
Imperial College London
Department Name: School of Public Health
Abstract
Background
There are serious challenges facing social care, education and health services for children and young people in England. Beyond high profile cases of avoidable child deaths, the social costs of poor outcomes of children in the care system are estimated to be £23 billion per year. From obesity to death rates, children's health outcomes are worse than in many comparable European countries. Many children have missed extended periods of school and fallen behind on learning during the Covid-19 pandemic.
Across Government, it is recognized that a joined-up strategy is needed to tackle these challenges. New research is needed to understand the links between sectors and identify the most effective interventions to improve children's outcomes. While some research questions are best studied using national datasets, other questions benefit from the additional breadth and depth of Local Authority and health data held at local or regional level.
Aims and activities
Develop a research-ready dataset
The primary objective of this project is to create a research-ready dataset linking data held on children by Local Authorities (including education & social care) and health services (including primary, secondary, mental health and community care). The first stage of the project will focus on the 8 Local Authorities in North West London, where our team has strong existing relationships and early work to link Local Authority and health data is already underway. In the second half of the project, we aim to scale up to a pan-London linked dataset.
A central strand of this work will be transparent communication with children, young people and families whose data will be included in the dataset, to explain the potential benefits, and the measures in place to protect confidentiality.
Pathfinder projects
Two pathfinder projects will showcase the feasibility and potential impact of using the new, research-ready datasets to guide spending and policy decisions. The first project will develop user-friendly information on Looked After Children in each Local Authority (e.g. how many are in contact with mental health services, and how does this compare to other areas?). The second project will demonstrate the value of the new dataset to address research gaps in key national policy questions. We will do one or more example projects that look at the impact of interventions in one sector on outcomes in another sector (e.g., does earlier support from mental health services improve later outcomes for Looked After Children).
Training and capacity building
The long-term aim of the project is that other researchers will use the new linked dataset for a wide range of new research projects, which will lead to more evidence-based and effective policies and services for children and young people. To make it as easy as possible for researchers to use this dataset, we will
- deliver training sessions for Local Authority staff working within Children's Services, Public Health, and data teams. This work will make sure they are aware of the new dataset and understand what kinds of analysis and research it can be used for.
- deliver a similar programme of training sessions for researchers who would like to use the new dataset.
- provide resources including data dictionaries and open-source code, and help to troubleshoot any problems when they start using the data.
Expected impact
We believe that the proposed new dataset will enable research leading to more evidence-based local and national strategies to support children, with potential to deliver huge tangible benefits in reduced spending and improved outcomes (for example fewer children needing Local Authority care, missing school, or being admitted to hospital).
There are serious challenges facing social care, education and health services for children and young people in England. Beyond high profile cases of avoidable child deaths, the social costs of poor outcomes of children in the care system are estimated to be £23 billion per year. From obesity to death rates, children's health outcomes are worse than in many comparable European countries. Many children have missed extended periods of school and fallen behind on learning during the Covid-19 pandemic.
Across Government, it is recognized that a joined-up strategy is needed to tackle these challenges. New research is needed to understand the links between sectors and identify the most effective interventions to improve children's outcomes. While some research questions are best studied using national datasets, other questions benefit from the additional breadth and depth of Local Authority and health data held at local or regional level.
Aims and activities
Develop a research-ready dataset
The primary objective of this project is to create a research-ready dataset linking data held on children by Local Authorities (including education & social care) and health services (including primary, secondary, mental health and community care). The first stage of the project will focus on the 8 Local Authorities in North West London, where our team has strong existing relationships and early work to link Local Authority and health data is already underway. In the second half of the project, we aim to scale up to a pan-London linked dataset.
A central strand of this work will be transparent communication with children, young people and families whose data will be included in the dataset, to explain the potential benefits, and the measures in place to protect confidentiality.
Pathfinder projects
Two pathfinder projects will showcase the feasibility and potential impact of using the new, research-ready datasets to guide spending and policy decisions. The first project will develop user-friendly information on Looked After Children in each Local Authority (e.g. how many are in contact with mental health services, and how does this compare to other areas?). The second project will demonstrate the value of the new dataset to address research gaps in key national policy questions. We will do one or more example projects that look at the impact of interventions in one sector on outcomes in another sector (e.g., does earlier support from mental health services improve later outcomes for Looked After Children).
Training and capacity building
The long-term aim of the project is that other researchers will use the new linked dataset for a wide range of new research projects, which will lead to more evidence-based and effective policies and services for children and young people. To make it as easy as possible for researchers to use this dataset, we will
- deliver training sessions for Local Authority staff working within Children's Services, Public Health, and data teams. This work will make sure they are aware of the new dataset and understand what kinds of analysis and research it can be used for.
- deliver a similar programme of training sessions for researchers who would like to use the new dataset.
- provide resources including data dictionaries and open-source code, and help to troubleshoot any problems when they start using the data.
Expected impact
We believe that the proposed new dataset will enable research leading to more evidence-based local and national strategies to support children, with potential to deliver huge tangible benefits in reduced spending and improved outcomes (for example fewer children needing Local Authority care, missing school, or being admitted to hospital).
Publications
Lazzarino AI
(2023)
Inequalities in mental health service utilisation by children and young people: a population survey using linked electronic health records from Northwest London, UK.
in Journal of epidemiology and community health
| Description | This ongoing award has achieved novel data linkage between health and social care data on children and young people for 3 Local Authorities. Work is ongoing to extend this linkage to other Local Authorities. |
| Exploitation Route | The Research Ready Dataset is available to external researchers, and we are preparing a suite of resources support access as part of this grant. |
| Sectors | Communities and Social Services/Policy Education Healthcare |
| Description | At local level, our findings have led to new partnerships and collaborations between academic groups (at Imperial College and Brunel University) and leaders/practitioners within health and children's social care. This is starting to inform commissioning and operational decisions within NW London. At national level, the Research Ready Dataset developed in this project is being used as part of NIHR-funded project to study variation in children's health and social care outcomes by household size. Preliminary findings have been discussed with the Child Poverty Taskforce and we will continue these conversations as the work progresses. |
| First Year Of Impact | 2024 |
| Sector | Healthcare |
| Impact Types | Policy & public services |
| Description | Extending the evidence base on the health impact of welfare policies (currently under review as part of the Child Poverty Taskforce) |
| Geographic Reach | National |
| Policy Influence Type | Contribution to a national consultation/review |
| Description | Our work was highlighted as an example of good practice in combining operational and research use of administrative data in a public facing ADR UK blog |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| URL | https://www.adruk.org/news-publications/news-blogs/two-sides-of-the-same-coin-operational-versus-res... |
| Description | ADR England Community Catalyst: Children at risk of poor outcomes |
| Amount | £759,592 (GBP) |
| Funding ID | ES/Y010566/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 01/2024 |
| End | 12/2025 |
| Description | NIHR SPHR Emergent Public Health Priority (EPHP) Funding - Exploring the impact of family size on child health outcomes and service use: A mixed methods analysis to inform welfare policy |
| Amount | £256,502 (GBP) |
| Funding ID | SPHR-EPHP-003-CHO |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 11/2024 |
| End | 04/2026 |
| Title | Discover NOW dataset of linked health and other records in NW London. |
| Description | This dataset continues to allow researchers access to DeIdentified Data from health and adult social care records for people registered with a GP in NW London. Through this project, we have recently secured the first linkage with children's social care data. |
| Type Of Material | Database/Collection of data |
| Year Produced | 2024 |
| Provided To Others? | Yes |
| Impact | We are currently working on the first preliminary analysis, so it is too early to describe any impact |
| URL | https://discover-now.co.uk/ |
| Description | Community Catalyst: Children at Risk of Poor Outcomes |
| Organisation | Swansea University |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | Co-funded by ADR England and Foundations - What Works Centre for Children and Families, this project aims to establish a broad and diverse community of researchers and analysts focused using (or aspiring to use) de-identified administrative data, to address these issues. It is led by Swansea University, Lancaster University, Imperial College London, University College London, and the University of Sussex. The project is also supported by: Barnardo's Data to Insight Children's Commissioner's Office Nuffield Family Justice Observatory Further information is available at https://www.adruk.org/our-work/browse-all-projects/adr-england-research-community-catalyst-children-at-risk-of-poor-outcomes/ |
| Collaborator Contribution | Our team contributes to all aspects of the work within this collaboration, including chairing/contributing to key meetings, collaborating on literature reviews and stakeholder events, and co-authoring outputs. We bring particular expertise in healthcare data and in local linked datasets, which complements the expertise of other partners. |
| Impact | N/A |
| Start Year | 2024 |
| Description | Public engagement to explain data sharing |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Schools |
| Results and Impact | Working with three year 12 pupils from a local schools, we developed a short animation to explain sharing of administrative data in an accessible way. This has viewed over one thousand times on x, 70 times on youtube. It is also accessible through the Imperial College website but we do not have data on the number of views. https://www.imperial.ac.uk/a-z-research/mohn-centre-child-health/themes/multi-sectoral-data-linkage/ This project builds on a wider programme of engagement work with local schools the general public. In July 2024, year 6 children from a local school presented their work as part of public engagement activities for the launch of the Mohn Centre (attended by ADR colleagues). We also have an ongoing 'data detectives' project with a year 5 primary school group which will be reported in late 2025. Year 6 Children3.7.24 |
| Year(s) Of Engagement Activity | 2024 |
| URL | https://www.imperial.ac.uk/a-z-research/mohn-centre-child-health/themes/multi-sectoral-data-linkage/ |
