1- Scientific context and project objectives

The project objective is to develop a tool that can describe, assess and conduct strategic and personalised analyses of disability situations. International and validated tools are available, but the limits of paper-based presentations mean that the contents of items cannot be filled in clinically or that important signs such as pain, skin disorders are omitted. Assessment scales are used and understood by specialists only.
We have shown that these forms can be computerised and easily accessible to laymen, while continuing to be useable by specialists (Vernay et al 2005, 2006). But the limits of paper documents hinder the process. A computerised database accessible via the Web combines the following characteristics:

• Personalised, readable and user-friendly
• strategic depending on the medico-social context
• explicit and relatively exhaustive
• adaptable and easy to disseminate worldwide
• scientific with the possibilility of populational search requests

2- Project description

The following six terms define the organisation of the online questionnaires:

• A box is a named group of categories of items
• A category of items is a group of items (questions) which are only answered if the category of items is validated
• The answers to categories of items can lead to responses to a series of items
• An item is a question which must have one negative response and one or more possibilities of positive responses. Each positive response may provide a supplement
• Item responses where there is always one negative response and one or more positive responses
• A supplement is extra information on a positive item response
• A sub-supplement is extra information on a supplement

A database of questions thus organised will be created, along with an interface for handling it. In this base, the system will generate a database of results and interfaces of data acquisition (questionnaires) tailored to certain medical specialities and question contexts. Expert interfaces for making complex requests will be set up. Application programs will be developed to fill in other questionnaires in other repositories (MIF for example) using the questionnaires completed in this question repository. The system will be available via Web interfaces.
Bibliographical studies (IGAS 2004 report) show that the assessment scales available are designed to respond to specific medical or social questions, and are not able to provide a multidisciplinary dialogue base. Redundant input data is common and the procedures complex, time-consuming and not very responsive. Developing a common interface would enable the person concerned and the carers (relatives, medico-social workers, service providers, etc.) to work together on filling in data and consulting via personalised requests.

3- Public or controlled use

The data will be for public use, but with limits due to medical secrecy. Only accredited stakeholders may consult the data retrieved from patient information. However, it will be possible to conduct anonymised epidemiological studies in established administrative contexts (research programmes, medical studies, etc.).

4- Expected results

This project is expected to lead to enhanced use in the scientific, medical, social and economic sectors. The law of February 2005 makes it a national priority: 1 in 10 people are in a disability situation. Enhanced scientific use, application of Dr D. Vernay’s research on the medico-psycho-social management of disability. Enhanced medical use, offering a parameterisable transdisciplinary tool; “general/specialist” request. Enhanced social use, improved medico-social collaboration (e.g.: link with the County-based Associations for Disabled People). Enhanced economic use, support with developing an innovative economic activity with the following aims:

• Distribute the tool to any facility working with disability, tailor it to user’s specific needs, maintain the results and questions database
• Create links between the databases of social partners and this medical database
• Conduct epidemiological studies

This project will be assessed by the facility (RSA).
This information system will be linked with the projects selected in the first call for projects on disability:

• Leukodystrophies (Prof. Odile Boespflug)
• Genetics and transcriptomics on CANCERS (Prof. Yves-Jean Bignon)
• Clinical Investigation Centre (pain study, Prof. C Dubray)

LifeGrid, the regional information system