EFA Funding Partners Meeting
Our funding partners meeting also took place on the 11 March at EFA Office in Brussels. Every year, EFA invites its funders in a transparent way to meet with the EFA team and the board and discuss progress. For EFA, its also an opportunity to hear from sponsors on their views on supporting EFA in our mission. EFA sincerely thanks all our funding partners for their contribution into our core as well as project funding and we count on your support.
EFA presented with U-BIOPRED at the “Applying open innovation to bring personalized medicine to new disease areas” workshop
EFA President Breda Flood was among the speakers at the workshop on Applying open innovation to bring personalised medicine to new disease areas, organised by the Innovative Medicines Initiative (IMI) in March in Dublin. Her presentation on “A personalised approach to severe asthma” focused on development in the area of asthma diagnosis and treatment.
Flood, being an asthma patient herself, pointed out that we still don’t have good enough understanding of the different phenotypes within the severe asthma population. “It means that many people do not have precise enough diagnosis, there are not effective enough treatments for them and no possibility for a truly individual management plan,” EFA president explained. There is also a lack of biomarkers that would enable us to effectively track disease progression or the impact of a novel therapy on the disease in clinical studies.
According to Flood, the U-BIOPRED project used a sophisticated and novel integrated “systems medicine” approach to help us characterise patients with different types of severe asthma more precisely. “Severe asthma is not a single disease and we have to take in account that individual patients are clinically very different,” she stressed.
EFA has provided and continues to provide patient’s perspective on living with severe asthma within and outside the consortium. “EFA has also provided independent patients and carers for the Ethics Board and the Safety Monitoring Board, and has nominated patients for the Patient Input platform. Communication at all levels has been a key to the progress of recruitment,” EFA president said.
All three speakers at the IMI workshop spoke about their involvement in the project from their own perspective. Flood presented about being involved as an asthma patient, professor Lars Klareskog spoke about Rheumatology from the academic perspective, and Bernd Stowasser added his remarks of Diabetes treatment from the business point of view. The following debate gave participants the opportunity to discuss how the IMI projects’ approach to develop personalised medicines could be extended to other disease areas.
The IMI workshop was part of the event on Innovation and Patient Access to Personalised Medicine organised by EAPM. The meeting brought together researchers, patients, physicians, regulators and politicians. The goal of the event was to encourage decision makers and health advocates to support a life sciences research and innovation PPP under Horizon 2020.
EFA attended the 25th Global Forum for Therapeutic Innovation & Regulatory Science (DIA) Euromeeting in Amsterdam
EFA president Breda Flood travelled with patient fellowship to the Netherlands in March 2013 to take part in the 25th Euromeeting organised by DIA. This global forum featured over 110 sessions and attracted more than 3,000 professionals involved in the development of medicines from more than 50 countries. The meeting, accompanied by more than 200 exhibitors, posed a unique opportunity for active involvement of patients’ organisations and encouraged their closer cooperation with students’ organisations.
The scope of the presentations covered pharmacovigilance and regulatory affairs for medical products and medical devices, R&D and clinical trials. Experts and authorities from the European Medicines Agency (EMA), the European Commission (EC), the FDA and other regulatory agencies mainly presented the experience gathered after the implementation of the new Pharmacovigilance legislative framework.
The opening plenary session was devoted to the Public/Private Partnership: ‘Working together in the interest of patients’ and the panel members focused mainly on the positive aspects and concerns of these initiatives. At the meeting, participants could also attend several tutorials aimed to improve their knowledge on topics such as the implementation of the new pharmacovigilance legislation, analysis of safety data from clinical trials, practical work with variations under the revised regulation or introduction to EU medical device regulation.
EFA representative Breda Flood was especially involved in the “DIA Fellowships meeting – patients’ representatives and students” which took part on March 6th, 2013. “Patients and Students were encouraged to mix and engage in informal round table discussions and then feedback to the whole group,” Flood described. After an open discussion among three main working groups, patients’ and students’ organisations identified common areas where they could foster their cooperation (e.g. internships for pharmacy students) and explore potential room for collaboration in awareness raising programmes. Breda also took part in a workshop on medical devices as EFA is following the EC proposal for a regulation on this topic closely.
More information about the meeting can be found here.
EFA Participates in European Public Health Alliance (EPHA) Social Media Training Session
On March 5th, 2013 EFA’s Membership and Programme Officer David Brennan attended the EPHA event in Brussels featuring social media expert and trainer Jon Worth. The objective of the session was to explain the current social media environment for policy advocacy in EU politics, specifically focusing on EU institutions in Brussels. His training included positive and negative case studies for social media advocacy, basics for social media uses within a work environment and advice on how to integrate different tools for social media into creating a holistic social media strategy (SMS).
The session also provided interesting facts, such as the fact Facebook is the only meaningful social media tool available in countries where it arrived first. If other social media platforms preceded Facebook in a specific national context, the use of other tools is as a result much higher. For instance, in the Netherlands, the social media tool with the highest use is Twitter, not Facebook. Facebook in addition appears to reach a broader audience, for instance, because although 87% of the American population may be aware of Twitter’s existence, only 10% of the population uses it. As a result, Facebook is a better tool for reaching ‘the masses’ while Twitter is much more useful for targeting individuals.
As EFA is currently developing its own SMS, the session was very well timed and provided valuable information and tips for the integration of social media tools into its work. In particular, the central role of the new EFA website will tie together other outlets like Facebook, Twitter, LinkedIn, Google+ and YouTube in what is known as the ‘Hub-and-Spoke’ approach, where social media tools interact with the webpage and vice versa. Mr. Worth also provided practical advice on how to actively monitor followers on Twitter when there are high volumes of information and also target specific policymakers and actors in the Brussels advocacy environment.