To celebrate the 10th Anniversary of the European Patients’ Rights Day, Active Citizenship Network has decided to organize a widespread campaign in 2016 in cooperation with some of the national patient associations involved in its network.
Patients want to access cross-border health services when treatment is not available in their home country, when it is managed better elsewhere, or, as in the case of many border areas, when the nearest available care is in another Member State. Currently, cross-border healthcare accounts for approximately 1% of the overall EU public health spending – around €10 billion per year.
The Directive 2011/24/EU on patients’ rights in cross-border healthcare has been regarded by many as a major achievement of the ‘patient empowerment’ policy promoted by patient organizations as well as European institutions, granting European citizens the right to access healthcare services in a different Member State. Designed to address the obstacles deriving from the diversity of healthcare systems, such as the reimbursement rules and the delivery of health-care services, the “Cross-Border Healthcare Directive” has established a general legal framework aimed at maintaining the sustainability of health systems while protecting patients’ right to seek treatment outside their home country.
According to the World Health Organization’s report on ‘Cross-Border Healthcare in Europe’, the volume of patient mobility within the European Union remains relatively low as people are frequently unwilling to travel to other countries for care. On the other hand, where patient mobility exists, it has raised issues related to its impact for patients, health professionals and health systems.
The report on the state of play of the Cross-border Healthcare Directive, published by European Commission on 4 September 2015, clearly shows that European citizens’ awareness about their right to choose healthcare in another EU country remains low. Less than two in 10 citizens feel they are informed about their rights in this area, and only one in 10 is aware of National Contact Points (NCPs).
These aspects have provoked calls for better coordination of health systems and policies across the EU, resulting in the implementation of the ‘Cross-Border Healthcare Directive’. The impact of Directive 2011/24/EU will depend to a large degree on the knowledge of patients across the EU of their rights under the legislation and its potential benefits.
At the moment, in EU only 2% of citizens had planned treatment abroad BUT, if properly adopted, the Directive can help reduce regional differences within each country, with benefits for the rest of 98% of the EU population. In fact we believe that not only the Directive can become a tool to find medical assistance in another country, but we also expect that in every place of care, in every country, region or local health service, every patient has equal rights to access to care, to information and free choice, to innovation, to quality and safety of care, to forward complaints.
It is fundamental to clearly show that the innovative potential expressed by the Directive is strong and that we are committed to work for its implementation.
The main aims of the communication campaign are:
- To improve the awareness of citizens and patients about their rights to go abroad for care.
- To build a network of patient/healthcare users’ organizations all around Europe, able to provide information and collect data on cross-border healthcare. Indeed, thanks to the identification of referent associations in each EU Member State, patients could contact a local patient/civic organization in case of need for advice or support during their stay abroad.
- To enable patient/healthcare users' organizations, to easily contact their counterpart in another country to get specific information on the local healthcare system - with a focus on the implementation of patients' rights – to help citizens.
- To contribute to collecting data about this issue
- To get in touch with National Contact Points and institutions accountable for cross-border healthcare management.
At national level, the communication campaign will be coordinated by the following civic & patient associations:
- Austria: Lower Austrian Patient and Nursing Advocacy
- Belgium: Active Citizenship Network
- Bulgaria: Patients' Organizations “With You”
- Croatia: Croatian Association for the Promotion of Patients' Rights
- Cyprus: Cyprus Alliance for Rare Disorders
- Czech Republic: Klub pacientů mnohočetný myelom, z.s.
- Denmark: Rare Diseases Denmark
- Finland: Association of Cancer Patients in Finland
- France: Inter-Association on health (CISS)
- Germany: Bürger Initiative Gesundheit e.V.
- Greece: Greek Alliance for Rare Diseases
- Hungary: Hungarian Federation of People with Rare and Congenital Diseases
- Ireland: Irish Patients’ Association
- Italy: Cittadinanzattiva - Tribunal for patients’ rights
- Lithuania: Council of Representatives of Patients' Organizations of Lithuania
- Malta: Malta Health Network
- The Netherlands: European Patients Empowerment for Customised Solutions
- Poland: Institute for Patients’ Rights & Health Education
- Portugal: Azorean Chronic Pain Patients Association
- Romania: Romanian National Alliance for Rare Diseases
- Slovakia: Society of Consumer Protection
- Slovenia: SIBAHE Slovenian Foodbank, Association for justice and control, Kultlab Celje Society
- Spain: Plataforma de Organizaciones de Pacientes
- United Kingdom: Pelvic Pain Support Network
The campaign is mainly addressed to European citizens and patients, involving the European civic and patients’ organisations currently collaborating with Active Citizenship Network, as well as other supporter organisations and media at local/national/EU level.
The campaign will take place in 14 EU countries in 2016, whilst, in 2017, the campaign will be reorganised in the remaining 14 countries of the European Union. The outcomes of the initiatives carried out in 2016 will help improve the campaign in the 14 other EU countries.
A leaflet, in the specific country language and in English, has been drafted with information on the patient’s rights to go abroad for care. The leaflet on the Directive, already produced by the European Commission, has been integrated with these concrete added values:
- the contact details of a patient organization
- the contact details of the National Contact Point
- useful information for the people with rare diseases.
Thanks to civic and patients organizations, the leaflet will be distributed directly to the citizens (whilst the European Commission just sent its leaflet to the National Representatives of the EC in the Member States).
The communication campaign foresees online and on-the-spot initiatives - at least one for each European Country involved - at local/national/EU level.
Suggested initiatives at local and national level:
- arrangement of open days or special openings of all the organisation’s headquarters and offices in the different regions of the countries involved: the staff members will provide to the public comprehensive information on the Directive on cross border care, distribute informative materials and collect case history.
- set up a stall in crowded public places (markets, fairs, other organisations’ events) to distribute informative materials for at least one weekend per month for two consecutive months; if the organization collaborates with local hospitals, the stall can be set up there;
- organise a press conference;
- arrange conventions, workshops or round tables with national speakers and experts.
- use of social media and any other communication tool (newsletter, web site etc..) to share the communication materials produced.
- EU webinar “Improving patients’ rights in the EU: the Case History of Cross Border Healthcare Directive”, on 4th March 2016, in Rome.
- Official presentation to EU Institutions in the framework of the celebrations of the X edition of the European Patients’ Rights Day, on 3 May 2016 at the European Parliament in Brussels, hosted by the MEPs Interest Group “European Patients' Rights and Cross-border Healthcare”.
- EU meeting at the end of 2016, with the involvement of EU Commission and EU Parliament, with the purpose of an overall analysis at European level of the effects of the Directive 3 years after its implementation (October 2013- October 2016).
Project duration: from January 2016 to December 2017
For more information, please contact:
Tel.: +39 (0)6 36718207
(Last Updated: April 2016)
The campaign is realized thanks to the support of
- Community PRO (Participation Resilience Organizing)
- ATMPs revolution: empowering leaders of EU civic and patients’ advocacy groups
- ENGAGE – Engage Society for Risk Awareness and Resilience
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