12 May 2015
European Parliament, rue RueWiertz 60,
Active Citizenship Network (ACN) has decided to dedicate the 9th celebration of the European Patients’ Rights Day 2015 (launched by ACN in 2003) to the sustainability of healthcare systems focusing on what concerns chronic diseases.
Chronic diseases represent the major share of the burden of disease in Europe and are responsible for 86% of all deaths. They affect more than 80% of people aged over 65 and represent a major challenge for health and social systems. An estimated € 700 billion per year (it means 70 to 80% of overall EU health care budgets) are spent on chronic diseases in the European Union. Moreover, we need to keep in mind the increasing demands for expensive medical technology that are made by a society that is ageing rapidly. In this context, the sustainability of our health and social systems is at stake. It is crucial to find new ways of investing in sustainable health systems, moving beyond limiting expenditure to addressing the demand for health and social services, much of which is related to chronic diseases.
ENS4Care, funded by the European Union, under the CIP-ICT-PSP-07 Framework Programme.
At a national and European level, the project coordinated citizens' involvement with public authorities in nine European countries to increase citizen initiatives' impact on the policy-making process in the EU. It was the extension of the EU Project "Joint Citizen Action for a Stronger, Citizen-Friendly Union (JoiEU)".
The 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.
On 11 January 2014, the Italian Council of Ministers adopted a document laying out the preliminary plans of the Italian Presidency of the Council of the European Union indicating pain therapy and palliative care as areas of focus during the Italian Presidency.
Cittadinanzattiva Onlus and its European branch Active Citizenship Network (ACN), being deeply involved in the European and national debate on patients' rights against unnecessary and useless pain, welcomes the Italian Presidency intention to tackle the issue of pain therapy and palliative care and would be delighted to contribute to the agenda and content setting with this regard.
Putting pain therapy and palliative care on its agenda will allow the Italian Presidency to position Italy as a pioneer in this field and share its own experience with other member states (especially with regard to the best practice law 38/2010 on palliative care and pain therapy). It will, above all, promote a greater awareness of the issue of chronic pain therapy among EU and national policy and decision-makers and over the longer term, reduce the negative impact of chronic pain on EU society. This would not only ensure a lasting legacy of the Italian Presidency but also pave the way to a better future for patients in Europe suffering from chronic pain. Based on an observation of activities undertaken by previous Presidencies in the area of health, the initiative outlined below (solely or combined with an integrated approach) could be considered by the Italian Presidency and stakeholder in order to promote the debate on palliative care and pain therapy during its term.
The role of citizens' organisations in the empowerment of patients with chronic diseases
Co-funded by the European Union, in the framework of the Health Programme (2008-2013).
Citizenergy was born from the motivation to promote decentralised and democratic financing of a better energy future by supporting sustainable energy crowdfunding platforms and energy cooperatives: energy by the people and for the people – pure and simple. Citizenergy, made possible by European Union funding, is the first platform to encourage cross-border investment in sustainable energy and the first to provide information on sustainable energy opportunities from both crowdfunding platforms and cooperatives. Moreover, it reinforces the work of such organisations in financing energy efficiency and renewable projects, increasing their reach while promoting transparency. By being a sort of "Tripadvisor" of the existing sustainable energy landscape, Citizenergy is a valuable resource for individuals looking to get involved in the energy transition process.
"European Citizens' rights: patients' involvement and Cross Border Care"
16th May 2013 – Brussels.
The project was realized with the support of the Europe for Citizens Programme of the European Union.
Cittadinanzattiva-Active Citizenship Network coordinated the project. It comes from the idea of collecting citizens' opinions on mobility in the EU as a critical theme for the European citizens' future and the implementation of the Europe 2020 Strategy. As a result, citizens were allowed to participate in decision-making and seek possible solutions regarding a pressing issue in their daily life and the following sustainable development implementation. They were able to formulate recommendations and present them to the EU institutions.
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.