Example 2: Monitoring and advocacy on patient rights at the European level 

Project Type : Advocacy

The Organization 

Active Citizenship Network (ACN), Rome, Italy
E-mail: info@activecitizenship.net,
Web: www.activecitizenship.net 

Created in December 2001, Active Citizens Network (ACN) is a network of European civil society organizations working to encourage active public participation in European policymaking. ACN’s policies center on the issues of health and corporate social responsibility. They conduct education and training at the regional level.

The Problem

While European Union countries valued the right to universal access to health care, ACN noted that budgetary restraints brought into question the quality of the health care system. Most notably, patients’ rights were compromised and violated in health care provision, which is in contradiction to the social model of health care promoted by the European Union countries. ACN noted that “[b]udgetary constraints, however justified, cannot legitimize denying or compromising patients’ rights.”

It is important to note that other trends also helped shape development of ACN. These developments included: increasing expense and rationing of health care services; the emergence of a consumer movement in Europe, and the demand for patients to play a more active role in managing their care and shaping their treatment; and increasing freedom of movement in the EU, which lead to interest in harmonization of basic standards.

Actions Taken 

Drafting the European Charter of Patients’ Rights. In 2002, the ACN and 15 citizens’ organizations worked together to draft the European Charter of Patients’ Rights. The principles of the charter aim to guarantee a “high level of human health protection” (Article 35 of the Charter of fundamental rights of the European Union). The purpose of drafting the charter was to raise awareness of patients’ rights, which were at risk throughout Europe due to financial constraints on the health care system.

Surveying implementation of the European Charter of Patients’ Rights. In 2005, ACN conducted its first survey study of hospitals throughout the European Union (excluding Luxembourg) to measure the implementation of the European Charter of Patients’ Rights. In 2007, ACN presented the final report in Brussels on the occasion of the First European Day of Patients’ Rights. A follow-up monitoring was conducted from May to October 2010. That monitoring report is available here.

Establishing a European Day of Patients’ Rights. ACT established a day to discuss patients’ rights across Europe. The European Parliament, EU Commission, and ESCC participated and provided support for this first European Day. In 2011, the EU Commission decided to officially support the Fifth European Day of Patients’ Rights.

Results and Lessons Learned 

Since publishing the European Charter of Patients’ Rights, there has been a dramatic improvement in the discussion of patients’ rights across Europe, including significant publications by public institutions, citizens’ organizations, and independent experts. Patients’ rights are now a part of the European policy agenda. Public institutions are increasingly aware of their obligations to patients’ rights. Finally, there is a greater recognition of the need to create common standards of medical practice to protect patients’ rights across Europe.

European Charter of Patients’ Rights

  1. Right to preventive measures
  2. Right of access
  3. Right to information
  4. Right to consent
  5. Right to free choice
  6. Right to privacy and confidentiality
  7. Right to respect of patients’ time
  8. Right to the observance of quality standards
  9. Right to safety
  10. Right to innovation
  11. Right to avoid unnecessary suffering and pain
  12. Right to personalized treatment
  13. Right to complain
  14. Right to compensation