The 2016 annual Youth Group Meeting was held over the weekend of 9-11 September in Utrecht, the Netherlands.  EPF staff Valentina Strammiello and Danielle Flores organised the meeting and attended as representatives of the Secretariat.

This was the first meeting for new Youth Group member Laura Arnout (BE). After a welcome dinner on the evening of the 9th, the meeting kicked off the following Saturday morning. The group had a full agenda and began with members reporting back on their advocacy activities from the past few months.

It was an action-packed summer for members Polis Stavrou (CY), Thomas Hough (UK), and Borislava Ananieva (BG), as all three helped organise different patient youth camps in their respective countries. The group then spent the entire afternoon restructuring the roles and responsibilities with the group, which was no easy task! At the end of the first day, the group managed to squeeze in a bit of fun by participating in an “Escape Room” teambuilding exercise.

On Sunday, an election was held and the members elected Marlou Schenk to join the Youth Group Board as their new Treasurer. Then the group held a brainstorming session to generate ideas for their work plan for the upcoming year. In 2017, the Youth Group will produce a video on discrimination and also contribute to the planning and organisation of an EPF young patient leader summer school, with a focus on advocacy training and capacity building.

The Youth Group will continue to actively recruit new members in 2017, particularly focusing on the countries and disease areas that currently lack representation within the group. The Youth Group will also contribute to the upcoming EPF Access campaign, providing their unique perspective as young patients. The goals for the coming year are very ambitious but after this gathering of planning and networking, the EPF Youth Group is highly motivated and up for the challenge!

Contact person:

Danielle Flores, Junior Project Officer

Valentina Strammiello, Programme Officer and Youth Group Coordinator

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.

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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.