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Learning Disabilities Data and Information Infrastructure
Principal Investigator - Simon Musgrave, Dr Udo Kruschwitz (udo@essex.ac.uk)
Co-Principal Investigator - Prof. A Holland, Dr Simon Lucas, Dan O'Neill
Start Date - March 2005 Now completed
Duration - 9 months
Location - University of Essex
Website - http://www.essex.ac.uk/hhs/research/Projects/LDgrid.htm
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.
Objectives
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 .
Methods
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.
Presentations
Exploring GRID technologies for 'joined up' Learning Disabilities Data
J. Gekas, U. Kruschwitz, S. Lucas, H Mann, D. O'Neill, University of Essex
S. Musgrave, KPMG
T. Holland, University of Cambridge
Eastern Region Learning Disability Research Network, Cambridge, April 2006
Confidentiality issues from the user perspective
S. Musgrave, D. O'Neill, U. Kruschwitz, University of Essex
1st International Conference on e-Social Science, Manchester, 22 - 24 June 2005
Confidentiality and Sharing Data: Technical obstacles and concerns
U. Kruschwitz, University of Essex
Agenda Setting Workshop: Confidentiality and Ethical Issues in the Wider Usage of Clinical and Administrative Data, Colchester, 25 May 2005
Publications
Integrating data for learning disabilities service providers - are the barriers and solutions, technical or organisational?
U. Kruschwitz, D. O'Neill, J. Gekas, H. Mann, University of Essex
S. Musgrave, KPMG
Informatics in Primary Care. Accepted for publication.
Joined up data - are the barriers and solutions, technical or organisational?
U. Kruschwitz, D. O'Neill, J. Gekas, H. Mann, University of Essex
S. Musgrave, KPMG
Published in the Proceedings of the 23rd Annual Conference on Healthcare Computing (HC2006), pages 125¨C132, Harrogate, 2006
Report on the NCeSS Agenda Setting Workshop on Confidentiality and Data Sharing
U. Kruschwitz, D. O'Neill, J. Gekas, H. Mann, University of Essex
S. Musgrave, KPMG
Technical Report CSM-434, University of Essex, 2005
LDGrid: Requirements and Technologies
U. Kruschwitz , D. O'Neill, J. Gekas, H. Mann, University of Essex
S. Musgrave, KPMG
Technical Report CSM-444, University of Essex, 2005
Confidentiality issues from the user perspective
S. Musgrave, D. O'Neill, U. Kruschwitz, University of Essex
Published in the Proceedings of the 1st International Conference on e-Social Science, Manchester, 22 - 24 June 2005