European Patients’ Rights Days, What has been done

I. Introduction:
In 2002, Active Citizenship Network (ACN) together with a group of European citizens organizations established a European Charter of Patients’ Rights, which includes the following 14 rights:the right to preventive measures; access care; information; consent; free choice; privacy and confidentiality; respect of patients’ time; observance of quality standards; safety; innovation; avoidance of unnecessary suffering and pain; personalized treatment; to complain; to receive compensation. All these rights, based on the Charter of Fundamental Rights of the European Union, are crucial in matter of European citizens and healthcare services. The majority of these rights are also embodied within the Council conclusions on Common values and  principles in EU Health Systems adopted in June 2006.

The reinforcement of these rights will become effective only with the cooperation and commitment of all healthcare stakeholders in every EU country. It is thus essential to increase awareness regarding the importance of patients’ rights and everyone’s responsibilities in guaranteeing their respect. We believe that celebrating a European Patients’ Rights Day every year in all the EU Member States would greatly contribute to this goal. It is a common occasion to inform, discuss and take commitments to improve patients’ rights in Europe and in each member state.

For this reason ACN, together with citizens’ and patients’ organizations throughout Europe, have taken the initiative to organize for the last six consecutive years the European Patients’ Rights Day.

The 1st European Patients’ Rights Day was celebrated on 29 March 2007 in Brussels at the European Parliament, with over a 180 delegates from 25 countries representing the interests of patients, public administration, policymakers, healthcare providers, legislators and industry stakeholders. The Head of Cabinet of  the Commissioner, Mr. Philippe Brunet, opened the event and some 23 MEPs from different political groups all spoke of the importance of the existence of a European Patients’ Rights Day. The event concluded with the commitment from ACN and participating organizations to push forward for the institutionalization of the European Day, the adoption of the Charter, and campaign for its implementation in all countries along with the celebration of the 2nd European Patients’ Rights Day in all EU countries.

This was followed by two Parliament Resolutions calling for the adoption of a European charter of patients' rights on the basis of existing charters in the Member States and of the work carried out by non-governmental organizations and recognizing “that there is a need to incorporate a common charter of patients’ rights in the future Community framework in order to ensure such rights are exercised in practice across borders and in the home country”.  Thenthe European Economic and Social Committee (EESC) approved an opinion on Patient’s rights (September 26, 2007) that “welcomes and acknowledges the European Charter of Patients' Rights, promoted by ACN since 2002”. Within the same opinion, the EESC calls on the European Commission to establish a European Patients' Rights Day, as we asked during the first European Patients’ Right Day.

The 2nd European Patients’ Rights Day 2008 was contemporaneously celebrated in 26 countries on April 18 2008 throughout national and local events. This conference was dedicated to the challenge that patients’ rights represent for the European Union and the national health care systems. It was one  of the 80 events that were promoted all around Europe by ACN partners on this occasion. The European Charter of Patients’ Rights was translated in 16 languages and informative pamphlets and posters were distributed in all events along with buttons in support of the official recognition of the European Patients’ Rights Day. In addition, a European conference, promoted by ACN in collaboration with Europa Donna Slovenia was organized with some 120 participants. The latter represented many different stakeholders – European an national citizens’ and patients’ organizations, health professionals
The European Event of the European Patients’ Rights Day 2008 took place in Gorizia, a small city on the border between Italy and Slovenia that embodies the European dimension of patients' rights and the concreteness of cross-border care. The European Patients’ Rights Day activities received the patronage of the European Parliament, the European Commissioner Androulla Vassilliou and the European Economic and Social Committee.

The 3rd European Patients’ Rights Day was celebrated on 18 April 2009 by some 34 citizen and patient organizations setting up over 80 events in 24 European countries. Events on  national level were quite different and covered a wide range of activities such as seminars, educational workshops, information stands handing out information in hospitals, clinics, Universities and other public areas.
In addition, there was a final European conference held in the Strasbourg Parliament, with the active participation of the Health Commissioner Vassilliou, and MEPs from the various political groups on 22 April the day before the crucial European Parliamentary vote on EU legislature that effected patients’ rights (Directive on Patients’ rights in cross border care, recommendations on patient safety and recommendations on rare disease). 

I am convinced that the general progression towards the active involvement of patients will help them to benefit more from their health care and help professionals to better understand their patients”, Vassillou said. He continued: “Patients’ rights are the core of the “Europe for Patients” campaign that I launched in September last year. This campaign highlights a number of European Union initiatives on health which are bound by a common goal: Better healthcare for all in Europe”.

The 4th European Patients’ Rights Day - 18 April 2010: in more then 100 European cities, citizens’ and patients’ organizations set up their own events to inform, discuss and take actions in improving patients’ rights in Europe and in every member state. They hung informative posts and handed out leaflets on the European Charter of Patients’ Rights’ in hospitals, clinics, doctors’ offices, universities and public places. Information Days were also held, and ad-hoc hotlines were opened as well. Furthermore, this year children were also involved in initiatives thanks to a drawing competition on how they saw the respect of patients’ rights’.

In addition, in the European Parliament in Brussels on the 6th of May, Active Citizenship Network organized a conference to finalize the 4th European Patients’ Rights Day events. Over 120 representatives of different healthcare stakeholders from all around Europe attended the conference together with MEPs and the European Commissioner of Health and Consumer Affairs. In the morning the MEPs presented a Declaration for the institutionalization of the European Patients’ Rights Day (n.41/2010) and there were the speeches of the representative from important European networks and institutions supporting the Day and the Declaration. The afternoon session was dedicated to sharing innovative experiences regarding citizen and patient participation in health policy specifically regarding HTA and evaluating health services.

During the conference it was stated that if organizations and associations want to continue to move forward in developing a policy on patients’ rights in Europe, it is necessary that the question regarding the concrete condition of citizens facing health facilities in Europe is put on the table, and taken into account when discussing and more importantly when deciding on the sustainability of health systems. Concerning this, data coming from patients’-citizens’ groups can help fill the information gaps resulting from the official sources.

The 5th European Patients’ Rights’ Day  11-12th April 2011was held in Brussels at the EESC (European Economic Social Committee). In this occasion, as every year, ACN organized a European Conference aimed at bringing together different stakeholders in order to discuss the real conditions of citizens in matter of health care services in Europe. This Summit has been the starting point of the national celebrations of the European Patients’ Rights’ Day.
The Conference was attended by 180 participants coming from 80 civic association and European networks, as well as all the EU Institution and industry representatives.

During the two-days meeting, rich and intense debates led up to different activities, such as the presentation of the assessment Report on the EU Patients’ Charter, the discussion of the Good Practices on engaging citizens and patients in Health policies and the award to citizens participation in Health for the first time in Europe. The assessment Report shown that the more infringed rights were the same three of last survey, that is patients’ time, free choice and access to care. Worrying situations were also found in matter of unnecessary suffering and pain.
The Conference was the opportunity to promote and present the Good Practices for “Engaging citizens and patients in Health policy”, and for the first year, it was established “The Best Practice on civic participation award”.

The presence and the remarks of John Dalli, the European Commissioner for Health and Consumers, was Particularly important for the success of the Conference. In his speech, he declared: “I would like to take this opportunity to pay tribute to European patients, to the organisations who represent them, and in particular to the Active Citizenship Network; I applaud citizens' organisations for maximising these rights with the report launched today and with their tireless work. The principles I have just mentioned are reflected in the newly-adopted Directive on patients' rights in cross-border healthcare. As its very title suggests, this Directive aims to put patients at the centre of EU action”.
The new Directive on Cross border health care and Patients’ rights. This was the main goal of the second day of the Conference. The discussion was carried out by Antonya Parvanova MEP, Anità Waldmann for Myeloma Euronet AISBI and Giovanna Giacomuzzi for Pharmaceutical Group of European Union. Every speaker presented the positive impact of the new directive on patients, which for the first time declares and fortifies the importance of citizens’ rights in EU health services. Parvanova summarized the wide meaning of the new Directive: "Reaching an agreement on the Directive on Patients' Rights in cross-border healthcare was not an easy task, but at least we have here a first step and a legal framework to go for more rights for patients in Europe. Let's not forget however that patients should have rights not only when they cross a border! It is crucial that we continue advocating for an equal access to safe and quality care for all in Europe”.
The 6th European Patients' Rights Day was celebrated in Brussels, with a conference entitled "Active Ageing citizens at the center of EU health policy", last 15th and 16th of May 2012.  The conference was fully focused on the European topic of the year “Active Ageing and Solidarity between Generations”.
Insofar as the number of ageing citizens is rapidly increasing (Europeans aged 65+ is expected to increase by 45% between 2008 and 2030, and even further to over 30% of the population by 2060) the issues of their access to health care services and the respect of their rights as patients are becoming central and extremely challenging.
The objective of the conference was thus to demonstrate that part of the solution resides in a change of perspective vis-à-vis ageing citizens, from weak patients into "empowered users" of health care services, able to contribute to a better implementation of their rights.
Best practices on Active Ageing citizens in health policies have been presented and discussed. The BP focused on what healthcare services, civic associations and governments are doing in this area to reveal the concrete benefits of this approach.
The conference in numbers:
120 Participants from 21 Countries; 45 national and European Patients’ Associations; 3 European Institutions: EU Commission, EP, EESC; 26 speakers; 2 sessions; 1 roundtable discussion; 3 workshops to share ideas and produce recommendations; 40 NGOs best practices collected in a report 10 examples of NGOs’ best practices presented during the plenary session. 13 Recommendations produced on active participation of ageing people. 3 Social Networks (ACN Facebook, Twitter, Scribd) described live all the conference.
The summary of the 6th EPRD

The 7th European Patients' Rights Day (EPRD) has been dedicated to the final principle of the European Charter of Patients' Rights, i.e. the "Right to participate in policy making in the area of health". Active Citizenship Network (ACN) has decided to emphasize it in occasion of the 7th EPRD for two reasons:

  • 2013 is the European Year of Citizens, which especially aims at raising citizens' awareness of their rights and at stimulating their active participation in the European policy-making;
  • 25 October 2013 is the deadline for the national transposition of the directive 2011/24/EU on the application of patients' rights in cross-border healthcare, which officially recognizes most of the rights established in the European Charter and can therefore not be successfully implemented without the involvement of patients' organisations.

The structure of the conference reflected these two rationales:
- The Directive on Patients' Rights in Cross Border Care
The Directive on Patients' Rights in Cross Border Care creates a clarified legal framework for patients' entitlement to seek healthcare in another Member State and to get reimbursed. But first and foremost, it is an innovative text which formally states for the first time the existence of EU patients' rights such as free choice, right to information, to quality of care, etc. The conference was part of a process aimed at supporting the involvement of civic organizations in the transposition of the Directive in every Member State, for a citizen-centered and successful implementation. This strategy, which has been officially launched by ACN in occasion of the conference, will bring to the celebration of the 25 October all over the EU. It will be an occasion for all patient and civic organizations to inform European citizens on what has been done and on what still has to be done to make the rights sanctioned in the Directive come true. Read the conference conclusions

- Patients' involvement
Patients' involvement and citizen participation should become a core strategy of European Health systems. However, despite the large agreement about the necessity to engage citizens, there is no systematic commitment on this issue, neither at EU nor at national levels. 
During the conference has been presented an overview of the situation in Europe (laws, experiences, obstacles, good practices) regarding the main fields of patients' participation (agenda setting, decision making, implementation, assessment, etc.), with a focus on participative policies in cancer care, an area in which the access to innovation and personalized treatments is especially crucial. Click here to download the full Report

Click here to download the programme

Click here to download the materials

The 8th European Patients' Rights Day (EPRD) was dedicated to  “The role of citizens' organisations in the empowerment of patients with chronic diseases”
The Bruxelles conference, co-funded by the European Commission, it was held at the European Economic and Social Committee  on the 12nd and 13rd of May 2014. There were more than 120 participants representing as many as 32 countries. Mostly of them was leaders of civic and patients associations, but also many health professionals and institutions, private companies, consulting firm specializing in European policies, university etc. The countries represented were not only EU countries, but also Kosovo and Ukraine, and thanks to experts from U.S.A, Canada and India, there were representatives from three different continents. During the 2-day conference, here have been 23 speakers, rich and intense debate led up to different activities such as the presentation of the assessment “Report on the EU Patients Charter”, the discussion on the best practices collected and the drafting of the final Manifesto.

The programme and all the materials

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