Data matters

Abstract

Data matters for and about disabled children and young people if they are to be visible in our global community. Data matters also for those of us who care for them to ascertain if we are making a positive difference to their access to services, support and opportunities, and to their participation and experiences of life. ‘The State of the World's Children 2013’1 celebrates the positive experiences and contributions to society of disabled children and young people, estimated to number 93 million globally, or one in 20 of children aged 14 years and under. The report calls for the collection of reliable and comparable data to guide planning and resource allocation and to improve the visibility of disabled children on the development agenda internationally. This call is echoed in the 2013 special report of the Chief Medical Officer in England,2 which estimates there are 0.8 million disabled children and young people aged 0 to 18 years in the UK, or 6% of all children. Data is required on prevalence and trends of specific disabling conditions and on numbers, characteristics, needs and circumstances of disabled children and young people at local level. Where data is available about disabled children and those with neurological disorders, there is evidence of significant variation.3-5 At the 2013 European Academy of Childhood Disability meeting in Gateshead, UK, Naila Khan spoke of how she returned to her native Bangladesh after training in London, collected population data about disabled children using community initiatives, then established evidence-based screening, and assessment and intervention programmes for them. Community engagement resulted in a positive shift in attitudes towards disabled individuals with community-wide benefits. What are the barriers to data collection? They are the very barriers that disabled children and young people themselves experience in their daily lives: physical, cultural, economic, communication, attitudinal, and underestimation of their abilities, including their ability to make decisions about matters that affect them. We clinicians cannot complain that collecting good data is ‘too difficult’ whilst also complaining that we are struggling to defend our services in times of austerity. Data is empowering; it paints a far clearer picture of the needs and complexity of the children and young people we serve than words alone. Good data are difficult to ignore; absence of data may contribute to the dismantling of services. The British Academy of Childhood Disability is currently running pilots of data collection across the UK about disabled children and young people in non-inpatient settings. The data set was developed by a group of clinicians with parent representation and a data terminologist, embracing the range of domains of the World Health Organization's International Classification of Functioning, Disability and Health Children and Youth version (ICF-CY), including body structure and function, impact on activities and participation, and personal and environmental factors. Once data collection as part of routine clinical care has been shown to be possible, the disability data set can be integrated into the UK's Maternity and Child Health Data set as a means of mandating all provider organizations to regularly and routinely report data about disabled children and young people. Hopefully, other countries will be pursuing their own solutions. Collecting population data requires us to be prepared for the consequences: we cannot reveal needs without being ready to begin to address them. There must be transparent pathways of care from screening and surveillance in our communities through to high quality inter-agency, multidisciplinary care if we are to realize the dream of the best and equal outcome opportunities for all. Care pathways must include reasonable adjustments to ensure that those living in the most challenging settings and circumstances have the same access to specialist services as those whose parents can more easily get them to clinics. Why should one child with a neurometabolic disorder have access to accurate and timely diagnosis and treatment, whilst another, with the same condition is left unrecognized, resulting in a higher burden of disabilities and earlier death? It is important for us all, from the safety and comfort of our institutions and regular schedules to not only provide the best possible care that we can for the individuals that are referred to us, but to be mindful of all with similar levels of impairments but greater barriers to overcome, who live in our wider communities. Their needs matter just as much. Collecting data, making sense of them, and using them to advocate for the needs of populations of disabled children and young people should provide a foundation for more equal outcome opportunities for all. Are we ready to rise to the challenge of data collection?