Project Duration: 36 months (January 2012 - December 2014)Total budget: approx. 7.000.000 €EC contribution: approx. 3.500.000 € (CIP – PSP - Pilot actions)
SUSTAINS - Support USers To Access INformation and Services – is a three-year project aimed at developing and deploying a basket of services in 11 European regions providing patients’ access to Electronic Health Records (EHR). The project, which kicked-off in January 2012, represents an excellent opportunity to explore and gather evidence-based information on patients’ access to EHR and assess whether and how patient empowerment can be effectively strengthened as a result of such access.The services proposed have been distilled from the experience of European regions which have already pioneered such access. Although each of these services has a specific objective, all the services contribute to the achievement of a new paradigm in healthcare in which the citizen/patient is no longer a passive subject, but an active player in the management of his/her own health.
SUSTAINS is a pilot study aiming to measure the impact of the identified services for patient access across the EU in the three areas below:1. Empowerment of patients: There is a growing tendency by patients and the public to question information from the health system, ask for a second opinion, demand respect and dignity in their treatment, expect convenience, etc. 2. Medical results: Progress in treatment especially of chronic diseases need efficient and continuous contact between the patient and the professionals in order to achieve optimal medical result.3. Efficiency and economy: With the new treatments available, and the growing demand from patients/public, there is a need for improved efficiency and economy.
The consortium consists of 16 partners, including the coordinator. There are two national bodies involved from Estonia and Slovenia; eight regional-level bodies from the following regions: Uppsala County, (SE project leader), Region Syddanmark (DK), Aragon (ES), Pais Vasco (ES), Scotland (UK), Thessaly and Central Greece (EL), South Karelia (FI), Norrbottern (SE); and one local-level body from Asolo – Regione Del Veneto (IT). Some regions are supported by eHealth competence centers. The project consortium also includes four European-level organisations, including EPF.
EPF plays a key role in this project, especially in two work packages (WP), notably WP3 “Evaluation and Deployment Planning” and WP4 “User Requirements”. In the context of WP4 EPF is responsible for the work on patient requirements identification which will be used to inform the use cases specification of the SUSTAINS services in an attempt to ensure that these services are as close as possible to real users’ needs. In the context of WP3, EPF is leading the work on patient empowerment evaluation aimed at assessing the change in patient empowerment before and after using the services.