LIDA Societies and CfIT< combine forces to tackle the inequalities blighting the UK
The Children’s Act of 2004 requires a Serious Case Review after the death of a child where abuse or neglect is known or suspected. It is rare to read a serious case review where a failure to share information across professionals and organisations is not identified as a contributing factor to the death. In December 2021, the tragic cases of Arthur Labinjo-Hughes and Star Hobson provided a depressing reminder that our public service systems and processes are antiquated, and fail to take advantage of the potent tools made available through data science.
The deeply upsetting circumstances leading to Arthur’s and Star’s death are symptomatic of a wide malaise affecting a multitude of children within the UK’s most deprived areas. Our nations are blighted by inequality and many of our most disadvantaged children do not get the support they need. The resulting emotional cost to families is enormous but so are the financial costs to the public purse incurred through a failure to support the needs of the next generation. LIDA Societies – led by Ed Manley, Dan Birks, and Susan Grant-Muller – has been created to ensure the powerful scientific tools at our disposal are used to tackle inequalities and address ‘wicked’ societal problems in a completely transformative manner.
The eradication of inequality requires community engagement and the development of accurate models of ‘place’. These models can then allow holistic evidence-based solutions to be implemented when tackling issues related to childhood vulnerability. This requires the intelligent collection, analysis and visualisation of data. Immersive technologies enable practitioners, policymakers and communities to visualise and interact with data in a meaningful manner. This is why LIDA Societies and the Centre for Immersive Technologies have combined forces to create an ‘Integrated Data Analytics Unit’ that brings together experts in data analytics and visualisation across Leeds and Bradford. The Integrated Data Analytics Unit is now leading a Regional effort to tackle inequality – a programme of work known as Digitally Acting Together As One (DATA 1).
DATA 1 seeks to connect the routine data collected and reported across different services to allow a multiagency response to childhood vulnerability. The covid-19 pandemic has lifted the lid on the costs of the current fragmented system. For example, the pandemic highlighted the large numbers of vulnerable children falling ‘under the radar’ of organisations with safeguarding responsibilities. The unavailability of connected information made coordinating a multi-agency response extremely difficult despite the same families requiring support from multiple organisations. These problems played out against the backdrop of rising inequalities, with service providers finding it increasingly hard to deliver the holistic support needed to address the root cause of many needs. The creation of a ‘gold standard’ data tool would transform public service delivery, and improve the support offered to hundreds of thousands of people.
DATA 1 aims to deliver a major breakthrough that will create data tools capable of improving service delivery across different providers including health, education and social care. These tools will: (i) allow early identification of need and (ii) enable frontline practitioners to organise efficient and effective multi-agency responses to people who would benefit from support. DATA 1 needs to overcome numerous challenges before genuinely useful data tools can be created. These challenges include: the technical problems of connecting and visualising data; the ethical and legal issues associated with data sharing; the logistics of engaging with the communities served by the tools; and the practicalities of producing a tool that can be readily used by practitioners from a range of different organisations. It is therefore unsurprising that a ‘gold standard’ data tool for public service delivery does not currently exist anywhere in the world – it simply testifies to the difficulties associated with this scientific challenge. But we can rise to meet this challenge if our academic community comes together to address these issues.
If we harness the academic firepower present across our campus (from the data scientists within LIDA and CfIT through our paediatric experts to our social scientists), and connect our academics with the relevant stakeholders, then a wide range of data tools could be created. This is the goal of LIDA Societies. The creation of data tools will empower policymakers, communities, and practitioners to tackle the numerous problems that currently plague our society. However, the logistical difficulties associated with trying to simultaneously create a number of data tools would prevent timely progress being made. Thus, the DATA 1 strategy is to focus on the creation of one tool within a single geographical locality (the District of Bradford) and then rapidly roll out implementation across Leeds and beyond.
Our first goal is to produce a data tool that can clear the queue of children on waiting lists for autism assessment, allow earlier identification of undiagnosed autism, and enable children with autism to receive multi-agency support as soon as their needs are recognised. The creation of this tool is requiring us to find solutions to the challenges, develop the necessary fundamental system architecture, and build the data warehouses. However, the resulting infrastructure will allow the production of other data tools at pace, and ultimately result in the generation of a range of tools in the shortest possible time period.
DATA 1 has started with a focus on autism because there is overwhelming evidence to show that identifying autism in the early years of life has immense benefits for the child and family. Unfortunately, many children do not have their needs identified until the end of primary school or when they are in secondary school. The issue of undiagnosed autism places health and education services under great strain and creates long term financial costs that could be avoided through early action. For example, many areas (including Leeds and Bradford) have lengthy waiting lists for autism assessment with children often waiting for many years before they receive the support they need. Furthermore, societal inequalities are reflected within the autism assessment process with children from disadvantaged backgrounds waiting much longer than their more affluent peers. Notably, children from disadvantaged backgrounds with undiagnosed autism are far more likely to also have additional needs that will require a holistic response from a number of different organisations. These factors mean that autism provides a useful test case for the development of a data tool that can tackle such complex problems.
Bradford is uniquely positioned to act as a pathfinder for DATA 1 as the relevant datasets have already been connected through the Born in Bradford project. Born in Bradford is one of the world’s largest longitudinal birth cohort studies and has linked the data for over 30,000 Bradfordians. The achievements of Born in Bradford have led to the creation of the ‘Connected Bradford’ database containing the connected routine records of children across the District. Moreover, the District has developed a plan that prioritises the use of data tools to tackle the inequalities affecting children and young people across the region. The plan has received approval from all of the relevant stakeholders. These factors mean that the infrastructure, mandates, and permissions are in place to test the scientific methodologies.
There is already evidence showing that these connected datasets can be used to improve outcomes for children and young people. For example, DATA 1 has used Connected Bradford to identify ‘red flags’ capable of identifying children at risk of autism, and subsequently tested novel approaches to addressing the problems associated with undiagnosed autism and other developmental disorders. This work has resulted in the SUCCESS programme which is now being rolled out across the UK.
SUCCESS (Supporting Understanding of Children’s Communication, Emotional and Social Skills) is a project that uses routine educational data to identify children within schools who would benefit from additional support. These data are then used to direct a teacher led process that can flag children at risk of undiagnosed autism (and other developmental disorders) when the routine data are combined optimally with standardised teacher observations. The project empowers schools to provide support as soon as a child’s needs are identified, and subsequently speed access to specialist health teams who can conduct their assessments within school settings in partnership with the school and family.
The progress made to date has demonstrated unequivocally the immense potential of data analytics and visualisation to generate societal benefit. It has also revealed the huge need for transformation across all of our organisations, systems and processes. LIDA Societies and CfIT hope that our outstanding academic community will join this collaborative partnership seeking to consign serious case reviews to history.
Professor Mark Mon-Williams; Director, Centre for Immersive Technologies