This is a brief overview of some of the key events and developments concerning the work of the Burn Care Informatics Group (BCIG), and especially the International Burn Injury Database (iBID).
The current iBID registry is the third attempt to create a burn injury database covering the British Isles. Although the current iteration is the most successful by far it has been only partially successful as Scotland and the Republic of Ireland do not participate.
The current state of iBID development is better understood by considering the reasons why the first two attempts in 1992 and 1998 failed:
Recognition of these facts was of fundamental importance when it came to designing the current data collection system in 2004. Crucially, progress was only made because a series of political developments drove the establishment of an agreed structure for the organisation of burn services, nationally overseen from the highest levels in the NHS by a single national organisation, the National Burn Care Group (NBCG), which demanded data collection. This was done in recognition that anything less would fail.
The original dataset was designed by clinicians in 1997 based on work originally done in 1992. The intention was to collect information about the entire burn care pathway based on the 3 main aims of the British Burn Association: education, research and prevention. The intention was to collect information that would allow a greater understanding of burn care and the means to improve it by education, while gathering information so as to allow the prevention of burn injuries and support research and audit.
The dataset was incorporated into software which was developed during the Modernisation Agency funded Action On initiative in 2003, which meant it was available for rapid finalisation and deployment after funding was provided by the NBCG in late 2004. This allowed the commencement of data collection by all burn services identified by the NBCG as specialised in April 2005.
The only requirement from the NBCG at that time was that information should be collected about all burn injury admissions to all major burn services in England and Wales. They accepted that information supporting injury prevention would be a secondary gain. At the time, an agreement was demanded by most burn services that although their data could be made available to the NBCG, no reports would be produced which identified each service by name.
Subsequent redesign of the dataset and expansion of its utility in 2010-12 was based on the information needs of the newly developed NHS Quality Dashboard (QD) which was first designed in 2011 by the national burn care programme manager. The design team at that time maintained the philosophical approach of the 1997 team. At no point was there a meaningful interaction with healthcare commissioners as to their requirements or needs although it was intended that information important to burn care planning and commissioning would be extracted from the clinical information. Specific attention was paid to elements of the dataset that would allow linkage to other healthcare datasets.
Important agreements central to a uniform understanding of the data included the development of the National Burn Care Referral Guidelines in 2012 which included the definitions of Burn Centre, Unit and Facility cases, and the development of a UK specific burn injury mortality prediction tool in 2013. This was followed in 2015 by the agreement of the burn care Clinical Reference Group (CRG) to publish the mortality results of identifiable burn services in the NHS QD and in Variable Life Adjusted Display (VLAD) charts. This was the first time this had been done by any burn service, globally.
Over the years there have been step changes in the approach by burn services to data collection.
Following an initial surge of input in 2005 there was a reduction in the number of cases entered into the database by a small number of services in 2006 as they argued for the use of the USA based NTRACS rather than iBID. After due consideration of both, the NBCG insisted on the continued use of the iBID.
There was a significant increase in the volume of data collection occurred when burn services decided to include not only admissions, as they were required to by the NBCG and Commissioners, but also the acute burn injuries not admitted. The numbers of this type of activity has consistently climbed and has become a very significant part of the activity reports for nearly all burn services. The decision by burn services to record this data appears to have been made when the overall activity figures for each service became available in 2008 following a decision to publish national reports which identified each service, reversing the 2005 agreements. It would appear services were attempting to reflect how busy they were in
comparison to their peers.
A further significant improvement in data completeness and data quality was seen with the introduction of the NHS Quality Dashboard in 2012 alongside improved collection software, which immediately identified on screen for the user whenever many of the common data entry errors had occurred. The provision of comparable data including mortality figures was a clear stimulus to (most) burn services to ensure their data was complete.