Manifesto for the implementation of the Right of European Patients to make an informed choice

Manifesto for the implementation of the Right of European Patients to make an informed choice

Rationale

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 [1] and the “Right to information[2] 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. T
he 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.

To subscribe the MANIFESTO, please:

1) write to This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it.This email address is being protected from spambots. You need JavaScript enabled to view it., including these informations: Country, Name of the Organization, Contact person name and phone, e-mail, website. 

OR

2) click on the on line petition

The Manifesto has been subscribed up to now by 31 associations in 13 Countries and 2 EU Networks and translated in Italian, German, Portuguese and Greek

ASSOCIATIONS :

  1. Lower Austrian Patient und Nursing Advocacy, Austria
  2. Working Group Kidney, Austria
  3. Working Group Self-help, Austria
  4. Community of Interests for Epilepsy, Austria
  5. Austrian Laryngectomees, Austria
  6. Austrian Diabetics Association, Austria
  7. Austrian Heart Association, , Austria
  8. National Patients’ Organization, Bulgaria
  9. Croatian Association for Patients’ Rights, Croatia
  10. Estonian Patient Advocacy Association (EPAA), Estonia
  11. Finnish Pain Association - Suomen Kipu ry, Finland
  12. Le Collectif Interassociatif sur la Santé (CISS), France
  13. Deutsche Gesellschaft für Versicherte und Patienten e.V. (DGVP), Germany
  14. Cittadinanzattiva Onlus, Italy
  15. Associazione Diabetici Parma  -  A..I.D, Italy
  16. AMICI Onlus, Associazione Nazionale per le Malattie Infiammatorie Croniche   dell'Intestino, Italy
  17. F.A.I.S. Onlus - Federazione Associazioni Incontinenti e Stomizzati, Italy
  18. Simba Onlus Italian Behcet's patients association, Italy
  19. Patients’ Ombud Office, Latvia
  20. Malta Health Network (MHN), Malta
  21. Chronic Disease Associations Network in Azores (RIADCA), Portugal
  22. APOROS – Associação Nacional contra a Osteoporose, Portugal
  23. APAHE – Associação Portuguesa de Ataxias Hereditárias, Portugal
  24. ADSMSM – Associação de Diabéticos de São Miguel e Santa Maria, Portugal
  25. Escola Superior de Enfermagem de Ponta Delgada, Portugal
  26. Associação Seniores São Miguel, Portugal
  27. ANEM – Associação Nacional de Esclerose Múltipla, Portugal
  28. Associação Atlântica de Apoio ao Doente Machado-Joseph, Portugal
  29. ADRNP – Associação dos Doentes Renais do Norte de Portugal
  30. Myeloma Euronet Romania (MeR), Romania
  31. Norwegian Cancer Society, Norway

  EUROPEAN NETWORKS:

  1. European Union of Private Hospitals · UEHP
  2. 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.



[1] Each individual has the right to freely choose from among different treatment procedures and providers on the basis of adequate information.”

[2]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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