The "Monitoring patients' rights in Europe" project was a joint effort by Active Citizenship Network (ACN), the European policy program of the Italian movement Cittadinanzattiva and the Tribunal for Patients' Right (TDM), the health policy program of the same movement along with civic organizations in each of the monitored countries.
This project is a follow up from the initial one started in 2002 with the drafting and promoting of the European Charter of Patients' Rights. The general aim of the project was to monitor the state of implementation of the 14 rights, as declared in the European Charter.
The right to carry out auditing and assessment activities in order to measure the actual respect for the rights of citizens in the health care system can be considered a basic activity of active citizenship. Carrying out this activity at the European level could therefore be considered a concrete and practical experience of exercising European active citizenship.
Period: from November 2005 to January 2007
With the scientific advice of: Prof. Fiorenza Deriu from the University "La Sapienza", Rome
With the support of: Merck Sharp & Dhome
The monitoring process of the European Charter of Patients' Rights carried out in the 15 old member states of the EU (Austria, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Netherlands, Portugal, Spain, Sweden, United Kingdom, plus Belgium and Luxembourg where the project could not be implemented).
The target of the survey were civic organizations dealing with health from all perspectives be it patients' rights, consumer rights, support to patients' family, health of specific populations or conditions, research, etc.. Organizations that operate at local, national and European level in 31 European countries - EU Member States and others, specifically Turkey, Macedonia and Croatia.
The project had the following objectives:
- to produce new information on the actual implementation of patients' rights,
- to change the role of citizens in the health care system from the traditional vision of citizens, seen as mere targets or users of health services, to the concept of them as active citizens involved in producing information with the aim of participating in the improvement of services and the policymaking process,
- to empower citizens' organizations as well as citizens themselves in the protection of rights and the caring for common goods such as health.
One of the most innovative activities of this process was to collect information through the direct observation of hospital facilities and interview hospital authorities. This gave citizens the opportunity to put into practice their right to participate in evaluating services and policies, as well as accrediting themselves with public institutions such as, the hospital administration and Ministry of Health. However, as well as being the most innovative part of this research, it also proved to be the most difficult, due to the fact the that this type of citizens' activity does not seem to be a ordinary practice in most countries. For many organizations it took a long time and required many attempts before they were actually able to have an interview with the hospital administration. Often, they were given the so-called "run around", as hospitals seemed to adopt a passive resistance approach, not recognizing the legitimate role of citizens to seek information regarding health care services. In the end, four countries (Portugal, Ireland, Germany and the UK) were not able to get an interview with hospital authorities.
Number of recipients by country plus the members of two umbrella organisations:
|Italy||132||IAPO national members||60|
|Latvia||16||EPHA national members||75|
- the first part includes the background, rationale and context of the project
- the second part summarizes the main results of the study
- the final part focuses on the conclusions and policy recommendations
- the final report "Patients' rights in Europe: civic information on the implementation of the European Charter of patients' rights" report, presented in Brussels 29th of March 2007 on the occasion of the first Eurpean Patients' rights day in Brussels.