Data matters for disabled children, young people and their families

The Chair of the British Academy of Childhood Disability explains how data is making a difference in ensuring disabled children, young people and their families get the services they need:

The Children and Young People’s Health Services dataset, otherwise known as the CYPHS, is helping to revolutionise the quality of data local areas have available to design and plan services fit for purpose that are efficient and effective.

Consistency in identifying need is essential.

Mary Busk, a parent carer from the National Network of Parent Carer Forums (NNPCF) agrees on the difference that data makes, highlighting that data really matters to parent carers and families and can help ensure services meet the needs of children and families.

A group of paediatricians working with parent carers, including Mary, therapists from the multidisciplinary team and terminologists from the Health and Social Care Information Centre (HSCIC) came up with an agreed list of 296 terms, each of which describes a specific need and all of which are fully explained in an “Explanatory Glossary”.

Each identified need in the Glossary has its own SNOMED CT (Systematized Nomenclature of Medicine – Clinical Terms) code. SNOMED CT is the preferred coding system for the NHS and, unlike other code systems, can describe situations such as family issues, housing issues, access to leisure issues, and technology dependencies – in addition to health conditions.

How does the dataset work in practice?  When the paediatrician sees the child and family in clinic they may want to consider using a consultation facilitation tool, such as the ‘traffic light tool’, to capture the concerns of families and where possible the concerns of the child themselves. This makes the consultation much more efficient and makes sure the issues that matter most to families are fully addressed.

At the end of the consultation, the paediatrician completes a data entry template in the electronic medical record, capturing all of the needs that are relevant to that particular child and family.

Once recorded in the electronic medical record, data can flow behind the scenes to the organisation’s data repository, where a range of analyses can be done and reports produced. This includes the now mandated monthly report to the Health and Social Care Information Centre (HSCIC), as part of the Children and Young People’s Health Services dataset. Reports will then be produced, including regular reports for CCGs and also for NHS Improvement. In time, data reporting will be linked to tariff setting for services.

The system allows the complexity of needs in relation to a disabled child or young person and their family to be clearly articulated and quantified. This information will be invaluable for planning and designing services that are better able to meet these needs. Once population needs are visible, there is a baseline against which to measure the impact of interventions and record outcomes.

Different local areas will be at different stages of the journey towards robust, electronic data collection and reporting. It is up to commissioners, clinicians, managers and IT teams together in local areas to discuss these issues and to recognise their collective responsibility to accurately assess and record the multi-faceted needs of all disabled children and young people if they are to be afforded the best possible opportunities to achieve the best outcomes, which matter to them.

In times of austerity, we cannot afford not to have robust data to evidence needs in the local population and to design services required to efficiently and effectively meet these needs.

More information about the Children and Young People’s Health Services dataset, how to register interest and how to find supporting tools can be foundon the British Academy of Childhood Disability website.

Dr Karen Horridge is a Paediatrician (Disability) in Sunderland and the Chair of the British Academy of Childhood Disability.

You can follow the British Academy of Childhood Disability on Twitter at @BACD_tweets.