X
Framework and rational
The patients' involvement and citizen participation are going to enter in the European Agenda of Health policy. Many studies have been promoted by scientists' society, private company, Public bodies, etc about the necessity of a citizens' engagement in the Health choices. The lack of financial resources and the economic crisis in one side and the growing of Health research and new requirements about diseases' treatments in the other side require different behaviors and innovative model of governance. Despite the studies and the widespread belief about citizens' engagement, there is not a systematic commitment on it at European and Member State level.
The Health Policy Forum policy, promoted by DG Sanco, has listed in its agenda many items on patients' inclusion in Health governance system. At the same time there are EU countries with good participative legislation or positive example of patients' involvement in Health National and local planning, in the management of specific disease, in HTA process, in quality assessing of Health services, in Ethical Committees, etc. It has a great importance the new model of public participation in clinical trials adopted in UK. Essentially this issue is more topical than ever, but has a very difficult implementation path.
The cancer care policies are considered one of the most important topics to discuss about patient involvement in the access to innovation and in the personalized treatments. In many European countries the advocacy of patients association has a strong commitment in introducing their point of view in the HTA and reimbursement policies and in the promotion and management of clinical trials.
JoiEU comprised a series of transnational debates mobilizing citizen participation and usage of innovative communications, advocacy strategies, and tools culminating in joint policy initiatives for greater citizen participation in the decision-making process in the EU. JoiEU aimed to develop a more vital awareness of the values and opportunities of European citizenship and initiate joint citizen action in thirteen countries to reinforce the rights of EU citizens.
Active Ageing citizens at the center of EU health policy
Co-funded by the European Union, in the framework of the Health Programme (2008-2013)
Co-funded by the European Union, in the framework of the Health Programme (2008-2013)
The main objective of this project was to raise the desire to become active citizens among young Europeans, informing them about the meaning and concrete practice of volunteering based on direct experience of civic and voluntary organisations. Furthermore, the project allowed voluntary organisations to understand better their actions in the European framework and qualified teachers to experiment with a new way of informal learning.
The project "Assessing Patients' Rights in Europe" aims to assess with the cooperation of national citizens' organizations the situation of 14 Rights as stated in the European Charter of Patients' Rights in various European countries and consequently set up a report on the state of these rights.
ACN has been developing a set of indicators and a methodology for assessing patients' rights in Europe inspired by a Civic information (civic audit) approach, which has been used as a framework in the Italian experience of Cittadinanzattiva.
The European Charter on Patients' Rights which aims at strengthening and bringing greater awareness concerning patients and citizens' rights, making concrete and applicable certain rights present in the Nice Charter of Fundamental Rights is the foundation of this new an innovative project developed by ACN.Citizens reporting on patients' rights is a concrete step towards strengthening and increasing the European civic dimension, an active European citizenship. This report will:
Putting Citizens at the center of Health Policy begins with guaranteeing patients rights are respected.
The reinforcement of Patients' 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 EU Member States is greatly contributing to this goal. It is common occasion to inform, discuss and take commitments to improve patients' rights in Europe and put citizens at the center of health policy.
During the IV EPRD, 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.
Date of the European celebration: 6th may 2010
The third European Patients' Rights Day took place on 18th of April 2009 and was celebrated by 34 citizen and patient organizations arranging more than 80 events in 24 European Countries. There were important national events such as seminars, educational workshops, information stands and 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 Healt Commissioner Vassiliou, 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).
In this occasion, Commissioner Vassilliou claimed: “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 second European Patients' Rights Day, promoted by Active Citizenship Network and its partners,was celebrated on 18th of April 2008 with national and local events.
The Charter was translated in 16 languages and informative pamphlets and posters were handed out in all events along with staples in support of the official recognition of the European Patients' Rights Day.
In addition, a European conference titled European Event of the European Patients’ Rights Day 2008, promoted by Active Citizenship Network in collaboration with Europa Donna Slovenia, was organized with some 120 participants. The latter - which represented many different stakeholders, including European and national citizens’ and patients’ organizations, health professionals - took place in Gorizia, a small city on the border between Italy and Slovenia, which embodies the European dimension of patients' rights and the concreteness of cross-border care. All of these activities received the patronage of the European Parliament, the European Commissioner Androulla Vassilliou and the European Economic and Social Committee.
Cittadinanzattiva APS
p.iva: 02142701008
via Imera, 2
00183 Roma
Tel: (+39) 06.36.71.81
Fax: (+39) 06.36.71.83.33
Rue Philippe Le Bon, 46
1000 Brussels - Belgium
