Best practices on Chronic Patients and Organizations’ empowerment

Active Citizenship Network (ACN) has decided to gather and share during the 8th celebration of the European Patients' Rights Day 2014 (dedicated to: "The role of citizens' organisations in the empowerment of patients with chronic diseases") the following best practices (BP) of different citizens and patients' organisations, coming from a wide range of EU countries on:

empowerment of individual patients: information, support and capacity-building of individual patients with chronic diseases, as well as their relatives, who usually play an essential role in helping them to deal with their conditions, including their social, psychological, and other impacts. This includes partnerships between patients' organisations and other stakeholders, i.e. health professionals, public institutions, media, healthcare industry, etc.

empowerment of patients' organisations by the creation of national or European networks, which transfer to them competences and tools, help them create partnerships, identify common objectives, etc., so as to have an effective impact on the health policy-making.

The BP come from 17 different Countries (Belgium; Bulgaria; Cyprus; Finland; France; Germany; Georgia; Italy; Latvia; Macedonia; Malta: Netherlands; Portugal, Romania; Spain; Switzerland; United Kingdom) and the sources are:
• experiences brought by the members of the Associations involved in the ACN Network and in the Organization involved in the Conference of the 8th European Patients' Rights Day 2014.
• some of the 40 BP "active involvement of active ageing citizens in the health policy" collected in the framework of 6th EPRD (2012) (

17 of 28 BPs concern the empowerment of individual patients, 3 of 28 concern the empowerment of patients' organisations, 8 of 28 relate to both the aspects analyzed.

The kind of subjects involved in the BPs are, of course, civic organizations but most of them includes the participation/promotion by public institutions, universities, health insurance, international networks, university hospitals, scientific societies, foundations, industries etc.


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With the support of:
eu flag europe
The European Union,
in the framework of the Health Programme (2008-2013)

European Economic and Social Committee


The European Patients' Rights Day 2014 has been made possible also thanks to an unrestricted educational grant from:

 novartis logo pharma logo 2014   pfizer logo





Directive 24/11: the information from the EU Commission

The EU Commission produced a short video to inform patients about their rights, and to advise them on things they should consider before going abroad for treatment. You can also find a leaflet, the principal Questions&Answers on the Directive and the list of the National Contact Point.

For your convenience, we have provided a letter to request the informative leaflet 'To know before you go'. Complete it and send it directly to: This email address is being protected from spambots. You need JavaScript enabled to view it.">This email address is being protected from spambots. You need JavaScript enabled to view it.

Directive 24/11: what the Associations recommend to the EU Institution

At European level, Active Citizenship Network addresses the EU Institutions so that they become facilitators and guarantors in:

  • building a network of National Contact Points;

  • begin a proper dialogue between the National Contact Points and the various stakeholders identified by the Directive as necessary interlocutors and at the same time striving to involve associations for patients and for the protection of rights;

  • promote opportunities for discussion and debate on the subject, for example within the EUHPF in order to disseminate awareness and maintain high attention to the important changes introduced by the Directive;

  • monitor the problems citizens may encounter while dealing with cross-border healthcare;

  • ensure that the development of e-health, urged by the Directive, may be safely carried out and without exposing the Member States to the risks of scams and frauds;

  • convey a European-oriented message built upon these new rights and provisions in healthcare which would help strengthen the sense of belonging to the European community.

(written in October 2013)


Directive 24/11: Public events all around Europe organized by ACN partners

To discuss with the national Institutions, inform the public opinion and to compare their experience with the ones coming from other Countries, civic and patients Associations linked to Active Citizenship Network have promoted public events. In particular:


The patient involvement in the Directive 24/11 transposition: a first assessment

A brief summary of the information produced by associations clearly shows that the behaviour of the various Member States, compared with the involvement of citizens and patients' organizations can be classified into three types:


Develop EU Pain Patient Pathways Recommendations

logo eu pain patient pathways

The Patients'Forum organized by Active Citizenship Network and Pain Alliance Europe last 22-23 October, 2013 it was the occasion to develop concrete proposals for the improvement of pain management in Europe: recommendations against pain, according to the patients point of view, for a good Health policy on chronic pain relief. With the Patients' Forum it started the II step of the project "Pain patients' pathway recommendations". 


Make them informed! A campaign for the implementation of the Right of European Patients to make an informed choice

The 7th European Patients' Rights Day, realized by Active Citizenship Network in Brussels in May 2013, has been an occasion for all of us, representatives of national patient organizations, European platforms, EU and national institutions, representatives of healthcare providers etc. to share our experiences on the directive 2011/24/EU on cross border care and on patients' involvement in health policies on a multi-stakeholder basis.


7th European Patients’ Rights Day

 "European Citizens' rights: patients' involvement and Cross Border Care"
16th May 2013 – Brussels

 The 2013 Conference promoted the involvement of citizens' and patients' organisations in health policies in Europe, both in general and in the implementation of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare, which should be transposed in all EU Member States within 25 October this year.


The patients’ involvement on Health policies in Europe: the citizens voice in Cancer Care decision making process

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.



logo eu pain patient pathwaysThe commitment against unnecessary pain is going to enter in the European Agenda of Health policy. A lot of data have been collected by scientists' society, private companies and governments, etc. about the diffusion of chronic pain and its societal and economical impact. New laws, as the Italian one, have proposed innovative contents to put in practice.
At the same time the willing of patients' organizations to have an even more active role in the commitment for reducing pain and in the promotion of a new policy on pain relief is growing. Recently, it was founded a new coalition of patients' and citizens' organizations, named PAE (Pain Alliance Europe), with the mission to represent the point of view of patients in the European pain policies.


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