1. European Federation of Nurses Associations (EFN) – Belgium
The EFN was established in 1971. The EFN represents 34 National Nurses Associations and its work has an effect on the daily work of 6 million nurses throughout the European Union and Europe. The EFN is the independent voice of the nursing profession and its mission is to strengthen the status and practice of the profession of nursing for the benefit of the health of the citizens and the interests of nurses in the EU & Europe. The EFN is the project coordinator of the ENS4Care Thematic Network. It leads WP1 – Project Coordination and Management of the consortium.
In 2015, Active Citizenship Network wants to start a research-project at the European level with the aim to give evidence on existing good practices in several European countries in terms of struggle against pain.
In particular, the research allows us to give continuity - expanding it with some specificity – to the investigation for good practices in the struggle against pain started by ACN in 2012.
Throughout the world, health outcomes have improved dramatically over the past decade. The key to this global health progress has been and continues to be the advance in science-based, medical innovation, including new procedures, diagnostics, health technologies and medicines.
While progress has been made, there is still an urgent need to accelerate the pace of drug discovery and research for tomorrow’s cures to address unmet health needs and to reduce the global and economic burden of illness and disease.
There is also much that must be done to strengthen health systems to ensure that these advancements reach the patients who need them. As Margaret Chan, Director-General of the World Health Organization (WHO) says, “Health systems are the foundation for better health. All the donated drugs in the world won’t do any good without an infrastructure for their delivery.”
We, the undersigned, call on national governments around the world to support the global search for new treatments and cures through policies that support, incentivize and promote medical discovery and innovation.
We call on governments around the world to commit to providing sustainable health care delivery, so that people who need treatment and medicines can get them, no matter what their financial standing. Governments should ensure patient and citizen involvement in health policy development and transparency in their decision-making processes.
Cittadinanzattiva has more than 30 year experience in the citizens’ rights protection in healthcare sector started with its Tribunal for patient’s rights (Tribunale per i diritti del malato) in 1980 and strengthened through the National Coordination of the Association of patients affected by chronic diseases in 1996.
Some of the areas we decided to strengthen in the last years are pregnancy, maternity and fertility protection and defense, intervening particularly on this last topic in order to overcome prejudices and fears, explaining the opportunities given by the current regulatory framework to couples who want to have children but have difficulties in the conception.
The commitment of Cittadinanzattiva can be demonstrated with different kind of activities:
The Commitment Of Cittadinanzattiva-Active Citizenship Network In The Prevention Of Cerebro And Cardiovascular Diseases
Cittadinanzattiva has more than 30 year experience in the protection of citizens' rights in the health sector, which initiated with its Tribunale per i diritti del malato ("Tribunal for Patients' Rights" or TDM) in 1980 and was later strengthened through the Coordinamento nazionale Associazioni Malati Cronici (National Coordination Centre of Chronic Patients' Associations) in 1996.
In spite of the fact that about 97% of health budgets are presently spent on treatment, whereas only 3% are invested in prevention (EU Commission 2013), we are convinced that prevention is imperative. CVDs are the number one cause of death globally: more people die annually from CVDs than from any other cause. The number of people who die from CVDs, mainly from heart disease and stroke, will increase to reach 23.3. million by 2030. CVDs are projected to remain the single leading cause of death. At a European level, the, the European Heart Network calculated that the cost for the treatment of cerebro and cardiovascular diseases is more than 196 billion euros each year.
"Chronic pain: making the invisible visible. European collection of good practices"
October 2nd, 2014
Venue: European Economic and Social Committee (EESC) – Room TTRE 7701 - 7th floor,
Trèves Bulding, 74, rue de Trèves, 1040 Brussels
During the Italian EU Semester of Presidency (July-December 2014), the conference represents an important occasion due to the political framework: this year, for the first time at European level, the issue of chronic pain is being put on the agenda by the EU institutions, also thanks to the active work of a number of patient and civic associations all over Europe.
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.
In 2002, Active Citizenship Network (ACN) together with a group of European citizens organizations established a European Charter of Patients’ Rights, which includes the following 14 rights:the right to preventive measures; access care; information; consent; free choice; privacy and confidentiality; respect of patients’ time; observance of quality standards; safety; innovation; avoidance of unnecessary suffering and pain; personalized treatment; to complain; to receive compensation. All these rights, based on the Charter of Fundamental Rights of the European Union, are crucial in matter of European citizens and healthcare services. The majority of these rights are also embodied within the Council conclusions on Common values and principles in EU Health Systems adopted in June 2006.
The reinforcement of these rights will become effective only with the cooperation and commitment of all healthcare stakeholders in every EU country. It is thus essential to increase awareness regarding the importance of patients’ rights and everyone’s responsibilities in guaranteeing their respect. We believe that celebrating a European Patients’ Rights Day every year in all the EU Member States would greatly contribute to this goal. It is a common occasion to inform, discuss and take commitments to improve patients’ rights in Europe and in each member state.
For this reason ACN, together with citizens’ and patients’ organizations throughout Europe, have taken the initiative to organize for the last six consecutive years the European Patients’ Rights Day.
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) (www.activecitizenship.net/files/take_action/active_ageing_eu_policy.pdf).
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.
With the support of:
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:
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.
- Directive 24/11: what the Associations recommend to the EU Institution
- Directive 24/11: Public events all around Europe organized by ACN partners
- The patient involvement in the Directive 24/11 transposition: a first assessment
- Develop EU Pain Patient Pathways Recommendations
- Make them informed! A campaign for the implementation of the Right of European Patients to make an informed choice
- National consultations: European active citizens for vaccination - 2019
- The successful experience of Polart Circle
- The involvement of Active Citizenship Network in SIP
- Active in Europe: Advocacy Prospects in the Aftermath of the European Elections
- The involvement of Active Citizenship Network in SIP SYMPOSIUM 2019
- Initiatives, tools & performing arts to increase participation: focus on healthcare
- European Civic Prize on Chronic Pain Second edition 2018-2019 Award Ceremony
- Polart Circle
- European active citizens for vaccination - 2019
- Improving patients’ rights in the age of the Cross Border Healthcare Directive
- The Engagement of Cittadinanzattiva-Active Citizenship Network on Therapeutic Adherence
- Improving patients’ rights in the age of the Cross Border Healthcare Directive
- Our policy on patient safety: focus on Healthcare-Associated Infections (HAIs) and Antimicrobial Resistance (AMR)
- From Citizen Involvement to Policy Impact (U-Impact)
- TOWARDS HIGHER PATIENT SAFETY IN EUROPEAN HOSPITALS. Innovation in hygiene and sanification to reduce healthcare associated infections and antimicrobial resistance
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