Integrating data for learning disabilities service providers: are the barriers and solutions technical or organisational?

Since the publication of the Government White Paper 'Valuing People: a new strategy for learning disability for the 21st century', the responsibility for providing health care for people with learning disabilities has shifted rapidly to primary care. However, people with learning disabilities are supported by a disparate group of providers, from health care through local authorities to the voluntary sector, with resultant difficulties in providing seamless care. There would seem to be considerable potential for 'joined-up' data and information services to improve this situation, and Semantic Web technologies offer many enticing possibilities in this regard. However, to be effective, many organisational and policy issues have to be addressed; not least among these is the concern of patient confidentiality. This is particularly pertinent given that people with learning disabilities might be less able to make informed decisions. The approach that this paper takes is to review the policy and service scenarios that would benefit from 'joined-up' data, and then, based on user feedback from a series of seminars with stake-holders on these issues, explore what works well, what works less well, and to offer suggestions for future developments.