A Charter of Rights is a document containing a set of rights which express ways to protect the more general right to health. These rights, although they are recognized by the (national and international) laws, are often unknown or violated.
What makes a Charter of rights different?
- A Charter is based on civic participation and advocacy
- It is not legal or technical, but it comes from citizens’ reports and complaints about violations or inefficiencies of the national/international systems
- It is a grass root initiative, meaning – again – that it should come from citizens
- It enables the concrete applications of rights with specific actions and interventions.
The European Charter of Patients’ Rights was drafted
- To bring together the inalienable patients’ rights which each EU Member State should protect and guarantee to citizens
- To help build a European identity
- To facilitate dialogue among different stakeholders and for setting standards.
Its first characteristic is that it is a concrete tool of action that should be:
- Publicly proclaimed at the level of different citizen organizations and institutions with the purpose of recognizing and improving the local context.
- Subscribed and officially adopted.
- Promoted among institutions, public and private actors of the health system, professionals in the sector and their associations, citizens and their associations.
The second characteristic of the charter is that it focuses on citizens and not on diseases. This means that patients with different pathologies can have the same rights: this subject aroused the interest of a large number of patient organizations, focused on different pathologies and different targets. It can be applied in both sectors, public and private.
Here below you can find some examples on how the Charter has been practically applied and used over the years. Of course, it is still an ongoing process:
A/The European Charter of Patients’ Rights as an Empowerment tool
Knowing the rights!
- Informing and educating citizens and health care workers
- Collecting forms of support for the Charter from many health stakeholders and professionals who underwrite specific commitments for its implementation
- Launching patients’ rights protection activities, both as prevention activities and as actions aimed at restoring a violated right (as it is being done with the right to avoid unnecessary suffering)
- Exchange with institutions can be organized based on the contents of the Charter, in order to develop policies and programs for the protection of patients' rights
Examples
- The Malta College of Family Doctors
The Malta College of Family Doctors issued a leaflet both in English and Maltese to be placed in doctors' surgeries, pointing out the patients' rights. - The Estonian Patients Advocacy Association (EPAA)
The Estonian Patients Advocacy Association (EPAA) has distributed the European Charter of Patients’ Rights as a handout. Printing this handout was partly funded by the Ministry of Social Affairs of Estonia - Trentino (Italy)
The Charter has been printed in 4 languages and placed in pharmacies and other health care structures by the local section of Cittadinanzattiva in Trentino (Italy). The Trentino is a border region, very much visited by tourists - EPHA, the European Public Health Alliance Proposal
EPHA, a European health network, used the European Charter of Patients' Rights as a reference to develop the Charter of Sexual Patients’ Rights, which has been translated to Russian and distributed to health professionals, policy makers and local health authorities and young sexual patients - The Hopitaux de Paris realized a video regarding patients’ rightsto be broadcasted in the hospitals on the video screens in waiting rooms and on the website of the association. In addition, the video will be sent to all the national institutions. European Charter of Patients' Rights leaflets, posters and pins will be distributed throughout the hospitals.
- Every year the European Patients’ Rights Day (EPRD) is celebrated in hundreds of cities and ways all around Europe here there are some examples of the celebrations in the last years.
B/The European Charter of Patients’ Rights as an Evaluation/participation instrument:
Are these rights respected and in what way in my hospital/country etc.?
The Charter was used as a common basis to evaluate healthcare services in Europe from the citizens’ point of view: a monitoring tool on the state of patients' rights.
Examples:
The Charter is one of the legal bases for the decisions of some Italian regions to promote and support the civic auditing of their health services.
For example, in March 2004, Cittadinanzattiva signed an agreement with the Lazio region in Italy, in which the Charter became the basis “to set forth directives and standards for the annual review of the General Directors’ (of health clinics and hospitals) activity from the public’s perspective”.
In the past years, Active Citizenship Network has developed two European Assessment programmes on the Patients’ Rights Charter with data collected from 20 European countries. The aim was to put citizens at the centre of health policies, transforming their role from mere targets and users of health services to active citizens participating in healthcare policymaking and, at the same time, to produce information on the actual implementation of patients’ rights at EU level.
1 "Monitoring patients' rights in Europe" project 2005-2007
ACN proposed a project to monitor the implementation of the European Charter of Patients’ Rights in then 15 EU member states in order to begin promoting and implementing the Charter while at the same time putting in practice European active citizenship.
http://www.activecitizenship.net/multimedia/images/patients_rights_report_final-eng.pdf
2 The project "Assessing Patients' Rights in Europe" 2010-2011
It aimed to assess, with the cooperation of national citizens' organizations, the situation of the 14 Rights stated in the European Charter of Patients' Rights in various European countries and consequently set up a report on the state of these rights.
Other monitoring activities:
2012-2014 - Pain Patient Pathway Recommendations
A three years multi-stakeholder project realized by Active Citizenship Network in partnership with Pain Alliance Europe in 18 European countries. The main objectives were: realize a civic assessment on chronic pain policies in the EU countries; create a greater awareness of chronic pain; promote a European policy on chronic pain and reduce the impact of chronic pain on all areas of European society. The projects outcomes include the development of the Report on the Assessment of the EU Patient Right of Avoiding Unnecessary Suffering and Pain and the publication of the EU Pain Patient Pathway Recommendations. For further information, please see our website.
2014 “In-dolore 2nd Edition” Project
A pilot civic audit in the Italian hospitals about treatment and attention to pain. Promoted by the Tribunal for Patients’ rights and realized in collaboration with the Civic Evaluation Agency to monitor citizens’ perspectives about treatment and attention to pain as well as the presence of fundamental services, features and best practices in the Italian hospitals.
Civic monitoring on first aid structural characteristics, organizations and attention landed to patients, 2015
Starting from the "state of the art" in the Italian emergency rooms and from the 14 rights of the European Charter of Patients’ Rights, the monitoring grids have been focused on the structural organization of the Emergency-urgency Departments, on presence formalized services and procedures that put the citizen at the center of the system for an increasingly effective humanization of care. Some examples: attention to privacy and confidentiality; the communication procedures between the structure of the healthcare, operators and family members; attention to pain in all stages of the path; a start from the evaluation of pain at triage; the presence of dedicated routes for the "Fragile people" or dignified spaces dedicated to the end of life. Read more
"Linea D" Monitoring the rights of patients with diabetes, 2007
A project that aimed at monitoring the quality of care for chronic patients, starting from the diagnostic-therapeutic pathways integrated into the care of the diabetic patients. Several subjects and stakeholders were involved in the project: the Ministry of Health, the organizations of chronically ill patients, the scientific companies, healthcare workers, family doctors, nurses, etc. The final Report underlined the importance of the diagnostic-therapeutic pathways in the management of chronic diseases. To know more, click here (IT language) https://bit.ly/2xjHbSU
C/The European Charter of Patients’ Rights as a Legal instrument
The Charter can be the basis for laws on patients’ rights and it can be formally recognized by the EU, national and local institutions.
We achieved a lot of successful examples at the EU level:
- The majority of those 14 rights are embodied within the Council conclusions on Common values and principles in EU Health Systems adopted in June 2006.
- Two Resolutions from the European Parliament have called for the adoption of the European Charter of Patients' Rights that the European Patients’ Rights Day promotes
- The European Economic Social Committee approved an Opinion on Patient’s Rights citing ACN and the Charter.
- The EU Directive 2011/24/EUon the application of patients’ rights in cross-border healthcare officially recognizes the “right to free choice” and the “right to information” included in the European Charter of Patients' Rights.
- The Report on safer healthcare in Europe: improving patient safety and fighting antimicrobial resistance (2014/2207(INI))", approved by the European Parliament on 19 May 2015) recognizes the value of citizens’ initiatives, such as the European Charter of Patients’ Rights.
Some relevant examples also at the national level:
- The first comes from the Maltese government, which has widely recognised the rights included in the EU Charter and adopted them through the HEALTH ACT 2013.
- The second from Italy: the Italian Ministry of Health has officially recognized the right to avoid unnecessary suffering and pain stated in the Charter, implementing the law no. 38 (15 March 2010) “Dispositions to protect access to palliative care and pain therapy”.
Extra UE example:
Just to go out of Europe here you can find an example about the work done thanks to the European Charter of Patients’ Rights in Colombia by ACN with the project “Rights and Development.”
Colombian case history: "Desarrollo y Derechos (Rights and Development)"
It was a three-year pilot project started in 2009 in collaboration with the United Nations Development Programme (UNDP) and in partnership with 6 Colombian universities and 2 local municipalities.
Some of the achievements of the project were:
- organisation of training courses for citizens and students
- constitution of 18 civic committees and 3 citizen-advisory centres for the protection of citizens’ rights in the field of public services and health establishment of a legal entity in Cartagena that draws Cittadinanzattiva’s experience: "Corporacion Tribunal de Derechos”
- Launch of permanent roundtables between companies that provide public services and citizens' representatives
- Publication of a practical handbook for active citizens on how to manage a citizen-advisory centre
The utmost important achievement was the draft of the First Charter of Patients’ Rights in Colombia, stating 12 fundamental patients’ rights: respect, access to care and information, free choice, timely care, personalized attention, continuum of care, safety privacy, health promotion and preventative measures, complain and participation.
This Charter of Patients' Rights was proclaimed on 16 December 2011 in Colombia. It was promoted by Cittadinanzattiva, the University of Sinú and Elias Bechara Zainúm, from the Tribunal for Patients’ Rights in Cartagena de Indias.
The Charter was built using four major sources:
- CIVIC SOURCE: complaints and reports of violations Colombian citizens addressed to the Tribunal for Patients’ Rights in Cartagena de Indias were collected;
- STATISTICAL SOURCE: the University of Sinù conducted an assessment of the state of health and patients’ rights to health in Cartagena
- LEGAL SOURCE: experiences and expertise of Cittadinanzattiva in drafting the Charter of Rights, promoted in Italy and in Europe
- EXPERIENTIAL: establishment of a school composed of experts of the health system and of citizens and advocacy patient and user organizations.
This experience was a great example of patients’ empowerment, and of the power of civic participation, active citizenship, and partnerships!
Let us know if you have other examples. Write to Daniela Quaggia:
