EPF launches into the social media sphere! We want to make sure you have the opportunity to connect with and contribute to our work, to understand the dynamics of our policy and project work to patient-centred healthcare and, most importantly, to promote unity across the EU patients’ movement.

Blog

At EPF a crucial value and way of working revolves around transparency. The EPF blog will add more depth and richness to the communication of our work by providing contextual information and new angles to a specific area. We will welcome our members as invited guests to link their own experience as a patient organisation to our work. Follow our blog posts and comment them!

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By launching the debate on our blog posts, looking at our videos on YouTube, becoming a fan on Facebook or following our tweets on Twitter you can make sure that you hear the latest news first on the patients’ perspective on  EU healthcare policy developments.

This blog is for YOU. And YOU are invited to use it, to make it, to transform it! We look forward to working with you!

One of the core strategic goals of EPF is to ensure health policy reflects the “patients’ perspective”. We want to promote the patients’ viewpoint, including issues around human rights and quality of life, so that it is heard at EU policy-making forums on health economics and health efficacy. At the recent EPF Annual General Meeting there was considerable discussion as to whether EPF should pitch more towards the human rights agenda.

This blog provides an opportunity to present a concrete example of how healthcare rights are interchangeable with human rights.  This is illustrated in the work of the European Cleft Organisation (ECO), an associate member of EPF.

Europe faces a huge discrepancy of care regarding children born with a cleft.  Hundreds of children born with cleft lip and palate inEastern Europeare denied basic access to healthcare.  Their parents are not offered appropriate support and advice in the early days after birth which can result in them being sent to orphanages, often on the advice of medical professionals.   This is a denial of their basic human rights. While surgery for cleft lip and palate exists throughout Eastern Europe (at varying degrees of competency) babies with clefts are disadvantaged after diagnosis because there are no agreed protocols of care or referral mechanisms in place.

To try to address this, ECO recommended the development of a European Standard in early cleft care. Such a standard would map out a clear support and treatment protocol for the first weeks of life, and especially around feeding.  Product standards at national and European level have been around for decades and are universally understood and accepted.  In recent years the European Standards Office in Brussels (CEN) has also been focusing on service standards and the European Commission has encouraged the extension of standards into the healthcare domain. Unfortunately, ECO’s proposal to develop a cleft standard was blocked in the first half of 2011 by the standards bodies in two member states.  ECO questioned whether adequate public consultation had taken place and sought support from the EPF who agreed to write to CEN to bring a wider European patient dimension to this issue. Whilst this raised the profile of ECO’s campaign, there was still opposition to the proposal on the basis that it would interfere with national legislation concerning health policy.

ECO continues to strive for a European agreement on cleft care and is now proposing to put together recommendations using a CEN Workshop Agreement rather than a Standard.  This will carry less weight but could, in future, be used as a basis for the development of standards in individual countries.

Would you like to have a clearer picture of the new EU pharmacovigilance legislation? Do you wonder how patients can be better involved in a process so crucial for the safety and high quality of medicines?  Have a look at the resources EPF have developed: the EPF “toolkit” includes a set of recommendations and guidance on the new EU legislative framework. The guidance is designed primarily for patient organisations and decision makers, with relevance for other health stakeholders, too.

What is pharmacovigilance? Why is it important? Pharmacovigilance is a system designed to monitor the safety of medicines after they have been authorised to be used or sold in parts or in all of the EU. It plays an important role in public health and protection of patients’ safety.

Before being authorised and coming to patients, medicines are tested in clinical trials: however trials are necessarily limited in time and in number, and patients involved in them are selected according to certain criteria. Thus, trials are an ‘artificial’ environment: they are not representative of real-life use. Once on the market, medicines are used by a far greater number of people, in different circumstances. Furthermore, some side effects can emerge only after a prolonged period of use. For this reason it is crucial to continue monitoring and collect as much information as possible on how medicines work in real-life settings.

Why are patients central to the pharmacovigilance system? One essential pillar of pharmacovigilance is the reporting of side effects of medicines (or adverse drug reactions) by patients to their healthcare professionals. Reporting is crucial: adverse drug reactions are estimated as the fifth largest cause of deaths in hospital.[1]  Moreover, it brings further knowledge that is crucial for the safe use of a medicine and if new risks are discovered, a range of actions can be taken by competent authorities to ensure patient safety. Yet both patients and healthcare professionals are currently underreporting: only around 10% to 25% of all adverse reactions are reported.[1]

Why EPF guidance and recommendations? EPF was very active in providing a patients’ perspective in the 2008 European Commission’s legislative proposals on  pharmacovigilance, which were finally adopted at the end of 2010. We participated in many internal and external debates, and worked with key stakeholders and decision-makers to ensure the final legislation would improve patient safety and the quality of medicine.

We were successful: the new pharmacovigilance legislation is promising in many respects. In particular, it will allow direct patient reporting of suspected adverse drug reactions, and it gives the public access to more information on safety of authorised medicines through the creation of national medicines websites and the Eudravigilance database.

The new legislation also offers opportunities for patient organisations to be involved at national and EU levels. The implementation by Member States of this legislation and, we believe, the way they will engage with patient organisations, is essential to deliver on its promise.

Our guidance for patient organisations gives an overview of the different aspects of the new EU pharmacovigilance legislation that are important for patients. Our recommendations for a patient-centred implementation aim at encouraging the development of a strong, open and transparent pharmacovigilance system that ensures the confidence of patients, health professionals and regulators alike, throughout the EU.

Through these resources, we hope to contribute to building a patient safety culture, where all actors including patients work together, and which encourages openness and transparency around adverse events to better prevent them.