EurordisCare3 Survey - Page2
Centres of Expertise: What expectations?
| Survey participants considered the following functions provided by a Centre of Expertise as the most essential: |
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| Coordinating the sharing of medical information on the patient between all professionals who care for him/her in the Centre of Expertise |
| Communicating with other Centres of Expertise and professional networks to harmonise treatments and research at the national and European levels |
| Coordinating the sharing of medical information between professionals of the Centres of Expertise and local professionals, to facilitate the continuity of the patients’ follow-up |
| Collaborating with research teams working on the rare disease (in particular for clinical studies) |
Centres of Expertise: Agreement on implementation
| Survey participants most strongly agreed with the following statements regarding the potential implementation of Centres of Expertise: |
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| A Centre of Expertise should involve patient organisations to benefit from their knowledge of daily life and needs of patients |
| Rare diseases are not well known by the majority of health professionals; it is therefore preferable to travel to a Centre of Expertise for consultations and most specialised care |
| To maintain the skills and experience of its professionals, a Centres of Expertise must follow a sufficient number of patients affected by a specific disease |
| Rather than concentrating all the expertise and competences in a single national Centre of Expertise, sharing them between several Centres of Expertises would be preferable and more accessible to patients |
Centres of Expertise: A Way Forward.
To address the common challenges concerning timely and accurate diagnoses and accessible and quality medical and social services, stakeholder discussions have revolved around the encouragement of rare disease national plans in each European country in which the organisation of rare diseases care is structured around Centres of Expertise. The creation of European Reference Networks, physical or virtual networking of knowledge and expertise, would provide the potential for a higher European added-value, while respecting the responsibility of Member States for the organisation and management of their health care systems.
| EURORDIS has and will continue to organise discussions empowering patient representatives in seeking multidisciplinary and comprehensive care and promoting adequate public policies through: |
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| a series of national and European Workshops held in 2007 involving nearly 300 participants from 12 countries |
| the adoption of the “Declaration of Common Principles on Centres of Expertise and European Reference Networks” by EURORDIS at its European Membership Meeting in May 2008 in Copenhagen; a list of key functions, proposed and agreed on by patients, to included in the functions of all Centres of Expertise |
| promotion of a policy on Centres of Expertise and European Reference Network both in the Directive on Cross Border Health Care and Patient Mobility as well as in the European Commission’s Communication on a European Action in the Field of Rare Diseases; |
| participation in the work of the EU High Level Group on Health Services and Medical Care as well as in the DG SANCO Rare Disease Task Force |
| participation in EUROPLAN, the European Project for Rare Disease National Plans Development, a Directorate General for Health and Consumers funded project that aims at developing recommendations on how to define a strategic plan for rare disease at the national level will allow a patient-centred contribution to the development of a key tool in the implementation of one significant recommendation in the European Commission’s Communication on a European Action in the Field of Rare Diseases. |
| close work with its 16 national rare disease alliances on national policies on Centres of Expertise as well as with its 25 rare disease specific federations on European Reference Networks |
| collaboration with the pilot European Reference Networks supported by the European Commission (often involving EURORDIS as a partner or an advisor). |
Through these intense efforts EURORDIS speaks out on behalf of all rare disease patients in Europe by promoting good health outcomes and contributing to a sound European Union policy for European Reference Networks of Centres of Expertise.
Rare Disease Day Partners: