People with learning disabilities (LD) constitute a significant minority in the UK, a conservative estimate being about 2.5% of total population. Approximately a quarter of this number are known to statutory service providers. The complex nature of the problems faced by many of these people necessitates a multi-agency approach, sometimes involving specialist services. An immediate consequence of this situation is that data for research, policy, local service development and support for the individual are distributed amongst numerous organisations. These data rarely have consistent structures and meaning.
The project assessed the user requirements and technical feasibility of e-science technologies for the delivery of health and social care data. In order to do this the project: (1) identified and examined existing data and information sources, both individual level (from surveys and administrative sources) and aggregate; (2) built up a firm understanding of the user requirements both for policy and research, via structured interviews and workshops, (3) examined the technical feasibility of joining up disparate data sources within the service providers using Grid-related technologies, especially in terms of ontologies, web services and distributed computing.
There was extensive engagement of the user community, including structured workshops to explore users' views and understand their requirements. The focus will be on the East of England, and include NHS trusts (local Primary Care and Mental Health trusts), Essex Local Authority, charities and possibly, Strategic Health Authorities. However as well as the workshops, wider links with the Department of Health, the social science community, e-science community, and international health knowledge community were utilised. The technical team engaged with other e-science and e-social science projects to ensure that wider developments were used and that the findings of the project were fed back to the scientific community via e-science and computing conferences, project visits, presentations to the local health and social care communities and publications.
ESRC RES-149-25-0038 as part of the e-social science programme
March 2005 - December 2005
Professor Tony Holland Department of Psychiatry, University of Cambridge
Dr Udo Kruschwitz (Principal Investigator)
Dr Simon Lucas
U. Kruschwitz, S. Musgrave, D. O'Neill, J. Gekas and H. Mann "Integrating data for learning disabilities service providers - are the barriers and solutions technical or organisational?". Informatics in Primary Care, 14(3): 175-181, 2006.
U. Kruschwitz, S. Musgrave, D. O'Neill, J. Gekas and H. Mann "Joined up data - are the barriers and solutions, technical or organisational?". In Proceedings of the 23rd Annual Conference on Healthcare Computing (HC2006), pages 125-132, Harrogate, 2006.
S. Musgrave, U. Kruschwitz, and D. O'Neill. "Confidentiality Issues from the User Perspective - Lessons from Learning Disability Services". In Proceedings of the First International Conference on e-Social Science, Manchester, 2005.
U. Kruschwitz , S. Musgrave, D. O'Neill, J.Gekas, H.Mann. Report on the NCeSS Agenda Setting Workshop on Confidentiality and Data Sharing. Technical Report CSM-434, Department of Computer Science, University of Essex, 2005.
U. Kruschwitz , S. Musgrave, D. O'Neill, J.Gekas, H.Mann. LDGrid: Requirements and Technologies. Technical Report CSM-444, Department of Computer Science, University of Essex, 2005.
Udo Kruschwitz, e-mail: firstname.lastname@example.org
© The Udo / last change: 27 September 2010