The SPADIS project aims at measuring the social participation (employment, education and social relationships) of people living with 6 chronic conditions in Belgium:
- cystic fibrosis
- neuromuscular disease
With the help of the ULB and VUB, Sciensano scientists aim to understand the personal and external barriers and facilitators of their social participation and inform the decisions-makers.
The SPADIS project has been designed to build capacity within Sciensano in the field of surveillance of social participation of people living with chronic conditions. The project enriches existing databases with additional information at the individual level, concerning the socioeconomic status and self-reported outcomes and experience. The 3 main objectives of SPADIS are:
- to measure the association between disability and social participation
- to develop and implement tool(s) for the e-collection of patient-reported outcomes and experience
- to assess the impact of contextual features, related to the healthcare and social security systems:
- on the association of disability and participation (cfr obj. 1)
- on the patient-reported outcomes and experience (cfr obj. 2).
Sciensano will then become a key player at national level in understanding the determinants of the “Health & Work” relationship, but also a major partner for international collaborations.
4 work packages, which are interrelated and include a total of 31 tasks, have been foreseen to reach these overall objectives.
The coordination of SPADIS is ensured by the WP1, which deals with administrative, technical and organizational aspects (including demands to ECs and privacy commission). Importantly, the WP1 facilitates and steers the SPADIS Advisory Board, composed by the key Belgian public administrations, to which SPADIS results serve and support the work.
The WPs 2 and 3 concern the measurement of disability and social participation, including patient-reported outcomes and experience. These two work packages work under the International Classification of Functioning (ICF) framework, using its indicators for measuring disability, social participation and classify the contextual factors (i.e. environmental and personal factors) as facilitators or barriers. To embrace the complexity of the Belgian social security system and ensure accurate measure, competing risk analysis is used by the WPs 2 and 3.
The WP4 is dedicated to policy impact assessment and stakeholder’s consultation and involvement, using focus groups, the Deplhi method, scenario analysis and the DYNAMO-HIA tool.
The challenging integration of quantitative and qualitative data ensures the provision of robust and highly relevant information to improve the quality of life of people living with chronic diseases.