This study describes a national data audit of the National Intellectual Disability Database (NIDD). The NIDD is a national information system for intellectual disability (ID) for Ireland. The purpose of this audit was to assess the overall accuracy of information contained on the NIDD, as well as collecting qualitative information to support the improvement in the quality of data contained on the NIDD. A nationally representative sample was generated from the NIDD. Twenty-five auditors were recruited from senior staff within statutory and voluntary intellectual disability services and trained by the authors. They carried out 250 clinical interviews with individuals with ID, their families and/or paid carers, using structured questionnaires. The data collected were analysed using frequency analyses and compared with the existing NIDD data set to assess accuracy. Qualitative information was also collected. Overall, the results from the audit indicate that almost three quarters (72.2%) of all the data recorded on the NIDD are accurate, with 19.3% inaccurate, and 8.5% of the sought audit data not returned. The audit found that the NIDD significantly overestimated the need for enhanced residential care services. The study highlights the need for clinician and service user involvement in specialist service data collection, in order to both conduct valid research and to best plan for ID service development.
With improved healthcare, people with intellectual disabilities (ID) are living longer (World Health Organization, 2000), and are requiring a range of services (Kelly, Kelly, & Craig, 2009). In addition, as countries plan community based support services to people with ID and their families, the costs of these services are rising (Organisation for Economic Cooperation and Development, 2006). Many countries are developing services with an emphasis on service user involvement in the planning and evaluation processes of service delivery (e.g. Department of Health & Children, 2001). In addition to service planning, service-based and national datasets and databases are regularly used for research purposes (e.g. the US National Epidemiological Catchment Area Database, Judd & Akiskal, 2003; the Paediatric Intensive Care Audit Network, McKinney et al., 2005). Accurate data, therefore, need to be available to both research teams and governmental agencies to best understand the needs of the target population and to provide and plan person-centered specialist support services (National Disability Authority, 2007). The need to measure and maintain the quality of these data has been highlighted (German et al., 2001).
The National Intellectual Disability Database (NIDD) was established in 1995 to plan and provide appropriate services for people with ID and their families in Ireland. The objective of the NIDD is to provide a comprehensive and accurate information base for decision-making in relation to the planning, funding and management of services for people with an ID, as well as being a research tool. The Database incorporates three basic elements of information: demographic details, current service provision, and future service requirements. This information is obtained for each individual known to have an intellectual disability and assessed as being in receipt of, or in need of, a specialist service now or in the next 5 years. The data held in any individual record represent the most up to date information available for that person. The record is updated whenever there are changes in the person's circumstances or during an annual review process. Each year, an official extract is taken from the NIDD and this forms the core data set for reporting for that year. In 2007, there were 25,613 people registered on the Database; of these 24,898 individuals (97%) were receiving services which included day services (24,729, 99.3%), multidisciplinary support services (19,799, 79.5%) and residential services (8,262, 33.2%) (Kelly, Kelly, & Craig, 2007).
