Manifesto for the implementation of the Right of European Patients to make an informed choice
1. The Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare is an opportunity to enhance the rights of all European citizens with respect to healthcare services, since national citizens will also benefit from a number of provisions initially planned to protect the rights of cross-border patients.
3. The right of patients “to make an informed choice” (art. 4 § 1.b) officially recognizes the “Right to free choice”  and the “Right to information” of the European Charter of Patients’ Rights, drafted in 2002 by Active Citizenship Network (ACN). Improving the information on healthcare services, the implementation of this principle shall allow all patients to access services better adapted to their personal requirements, both abroad and in their own country/region.
2. The ongoing transposition of the Directive, which states: “Member States shall ensure that the national contact points consult with patient organisations”, is a unique occasion to enhance the collaboration between national institutions and representatives of patients and users to agree on implementation measures as much adapted as possible to the needs and expectations of citizens in each country.
What does Active Citizenship Network ask for?
1. Citizens’ organisations representing patients and users must be involved in the transposition process in all Member States. They shall have their say on all national provisions implementing the text, especially those regarding information of citizens and the reimbursement of costs of cross-border healthcare, which both heavily condition the effectiveness of the right to make an informed choice.
2. All the information mentioned in the Directive should be directly accessible through the national contact points, including information on treatment options, on the availability, quality, safety and prices of the healthcare services supplied by the different providers in the Member State of treatment.
3. Information on waiting lists and on humanisation of care, which are not mentioned in the Directive but are key issues in the determination of patients’ choice, should also be available through the national contact points.
4. Beyond the web portals, the contact points shall set up a service of personalized information of citizens through telephone and email.
5. All the information provided by the national contact points should be available in several languages, including English.
The web portals of the national contact points should promote graphic presentations of data, which do not require specific language skills.
6. The content, presentation and organisation of information on the web portals of the national contact points should be agreed with the representatives of patients and users, so that it shall be easily accessible and understandable by citizens.
7. The effectiveness of information’s provision through the national contact points should be assessed and reviewed in collaboration with the representatives of patients and users on a regular basis.
8. Information campaigns aimed at raising the attention of citizens on their rights deriving from the Directive and on the existence of the national contact points shall be organised in occasion of the entry into force of the national implementation measures in every Member State and no later than 25 October. These campaigns shall involve citizens’ organisations representing patients and users.
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- Lower Austrian Patient und Nursing Advocacy, Austria
- Working Group Kidney, Austria
- Working Group Self-help, Austria
- Community of Interests for Epilepsy, Austria
- Austrian Laryngectomees, Austria
- Austrian Diabetics Association, Austria
- Austrian Heart Association, , Austria
- National Patients’ Organization, Bulgaria
- Croatian Association for Patients’ Rights, Croatia
- Estonian Patient Advocacy Association (EPAA), Estonia
- Finnish Pain Association - Suomen Kipu ry, Finland
- Le Collectif Interassociatif sur la Santé (CISS), France
- Deutsche Gesellschaft für Versicherte und Patienten e.V. (DGVP), Germany
- Cittadinanzattiva Onlus, Italy
- Associazione Diabetici Parma - A..I.D, Italy
- AMICI Onlus, Associazione Nazionale per le Malattie Infiammatorie Croniche dell'Intestino, Italy
- F.A.I.S. Onlus - Federazione Associazioni Incontinenti e Stomizzati, Italy
- Simba Onlus Italian Behcet's patients association, Italy
- Patients’ Ombud Office, Latvia
- Malta Health Network (MHN), Malta
- Chronic Disease Associations Network in Azores (RIADCA), Portugal
- APOROS – Associação Nacional contra a Osteoporose, Portugal
- APAHE – Associação Portuguesa de Ataxias Hereditárias, Portugal
- ADSMSM – Associação de Diabéticos de São Miguel e Santa Maria, Portugal
- Escola Superior de Enfermagem de Ponta Delgada, Portugal
- Associação Seniores São Miguel, Portugal
- ANEM – Associação Nacional de Esclerose Múltipla, Portugal
- Associação Atlântica de Apoio ao Doente Machado-Joseph, Portugal
- ADRNP – Associação dos Doentes Renais do Norte de Portugal
- Myeloma Euronet Romania (MeR), Romania
- Norwegian Cancer Society, Norway
- European Union of Private Hospitals · UEHP
- Pain Alliance Europe · PAE
We are creating a European coordination of patients’ associations and other stakeholders interested in working together on the implementation of the Directive, in sharing information, as well as good and bad practices. We will collect information on what is going on at national level from citizens' point view and share it with the European commission.
 “Each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information.”
 “Every individual has the right to access to all information regarding their state of health, the health services and how
to use them, and all that scientific research and technological innovation makes available.”
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