For the NHS, data saves lives, in the children’s sector, data is an afterthought

For the NHS, data saves lives, in the children’s sector, data is an afterthought

Is data the first thing you think of when you consider how to transform the lives of the most vulnerable children and families in the country? It might not be. Data is often sidelined because we think data is simply numbers, facts and depersonalised information that is difficult to access and interpret. But good quality data in the hands of those who need it is powerful: it keeps children safe and supports them to thrive. This is because data tells a child’s story and analyses the risks they face, captures professionals’ judgement and decision-making, and whether and why services make a difference. At Foundations, we want to see the sector galvanise behind a shared vision and roadmap on data to make our ambitions for children a reality.  

That’s why we are delighted to be partnering with ADR UK to co-fund an ADR England Research Community Catalyst for Children at Risk of Poor Outcomes. Our ambition is to deliver critical capacity building activities and shape strategic thinking to create momentum for a number of critical issues our sector urgently needs to address.  

Across the sector and the long-term, investment in four key areas would deliver significant progress: 

  1. Improve the quality and quantity of data about vulnerable children  
  2. Increase the potential for and investment in linking existing datasets  
  3. Invest in improving data systems and data policies to ensure data can be accessed by children and families, practitioners, local and national decision makers and researchers 
  4. Set a national strategy, which holds stakeholders to account on key metrics and progress  

Improving the quality and quantity of data about vulnerable children is necessary to improve services for children. Good quality data is data that accurately and sensitively reflects the lives and experiences of children and families and empowers everyone to improve their lives. For example, if we sourced feedback from children and families, this could be used to give them more power to hold services accountable. Where practitioners are trained and empowered to produce, use and share data, their decisions could be better grounded in evidence and fault lines that put children at risk prevented. Service leaders should be provided with high quality, accessible data about population needs and services and use this to underpin effective commissioning and strategic decisions. Data is also essential for policy stakeholders such as Department for Education and Ofsted to hold others to account and design new policies. Critically for Foundations, and other researchers, we need data to describe social problems, map service delivery, examine the impact of interventions and tell stories about children’s lives.  

Currently, most of the data that we have and use on vulnerable children comes from statutory returns from local authorities to DfE which is sparse and often poor in quality. Data on children’s experiences and outcomes (rather than records of involvement) is extremely limited. At Foundations we want to see this change; so this year will be working to identify appropriate measures that capture the well-being of children in care and care leavers. We hope to see such data collected routinely and integrated in the dashboard DfE are developing for Children’s Social Care.  

Other more comprehensive datasets exist, including a number of cohort studies in England; these track children over time and collect data across a large range of domains including family, housing, health, education and their social world. But vulnerable children are less visible in these datasets, because they drop out or their experiences of adversity are not adequately captured.  

Data quality and quantity would be immediately improved if we could link the myriad datasets that already exist. Poor data linkage means, for example, that we don’t have national data about vulnerable families, only data on children and parents collected separately. There has been encouraging activity in recent years, including significant funding initiatives by government and research funders to invest in data linkage. This means we have datasets which link education and children’s social care data, with health data (in E-CHILD) and data from the Ministry of Justice (Data First). There are also examples from local areas; these include ambitious attempts of the NIHR funded BaBi network of local authorities to harness the power of routinely collected datasets to create cohort studies across sectors and the Think Family Database, which allows all those working across education, police and the local authority to access data about the children and families they are working with. This work is critical to improve case management, referral pathways, safeguarding, risk assessment and better multi-agency support for families.  

Creating a unique child identifier would accelerate (though not resolve) greater data linkage, production and sharing. While there is still some way to go, Children’s charities have also lobbied government for a consistent child identifier which would unlock crucial data sharing and linking. DfE and DHSC are actively pursuing this through the Family Hubs agenda, where sharing data is a critical component of practice.    

Good quality data and data linkage relies heavily on a strong data infrastructure which is needed to record, store and analyse data, and data policies which bring to light how these should be used and data shared. However, the tools and technology in use are dated and inefficient. Our sector has yet to harness the potential of data science and artificial intelligence, and, perhaps because of this, we don’t attract the talent we need to transform how our sector uses new technology and data. Addressing this will require significant investment in infrastructure and a levelling up of technology, digital tools and workforce capacity. With significant funding shortfalls in central government and local authorities, it is not clear where this investment will come from however.  

Data sharing amongst practitioners remains a significant barrier to adequately safeguarding and supporting children. There are countless examples highlighted in serious case reviews and reviews of the system which point to multiple barriers to effective data sharing. These are not rehashed here but it is clear that further work is urgently required to address this.  

Finally, we would like to see a national strategy on data for children, like the one set out for data in the NHS – Data Saves Lives – which galvanises stakeholders around a set of ambitious objectives. We want to see an action plan which proposes concrete and costed solutions to cultural, behavioural and structural barriers to maximising the use of data. Ultimately, it would set out how we create an effective support system which is underpinned by high quality data.  

The recently published DfE Children’s Social Care Data and Digital Strategy aims to build the foundations for data and digital for some parts of the sector; it builds on previous initiatives by other government departments for vulnerable children and provides a new impetus for putting some of the changes we want to see in train. Yet there its tone and ambition sit in stark contrast to the NHS Data Saves Lives Strategy. Vulnerable children deserve an equally ambitious strategy.  

We don’t pretend there are easy solutions to this, given the scale of the problem and investments needed. But we are committed to playing our role. Our mission is to generate and champion actionable evidence that improves services and ultimately transforms the life chances of vulnerable children; improving the data landscape is key to making this a reality. Our partnership with ADR-England is an exciting first step in this direction. We are funding this Community Catalyst to build to: 

  1. Provide strategic research leadership, setting an ambitious agenda for researchers to collaborate with others to maximise the potential of data  
  2. Build capacity for researchers using administrative datasets, increasing opportunities for training and skills development  
  3. Galvanise and empower a diverse community of data users to build meaningful and sustainable collaborations with a shared purpose across the sector.  

Over the next two years, Foundations will work closely with this community and other sector experts who are eager to see urgent change in the system; the children and families we support deserve no less.  

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