EFA in meetings

EFA participated in the EUPATI 2013 Conference in Rome

On the 19th of April patients’ advocates, academia and other stakeholders met at the EUPATI 2013 Conference (European Patients Academy on Therapeutic Innovation) focused on real world healthcare hot topics. At the meeting EFA was represented by Board Member Lina Buzermaniene.

EUPATI projects aims at building patients’ learning platform in research and development (R&D). It is providing tools and knowledge which can make a difference to patients, advocates, patient organisations and the general public.

At the conference delegates were discussing three main topics: patient involvement in medicines research and development (R&D), building competences and knowledge in medicines R&D and increasing the public awareness of benefits and risks of new treatment development. EUPATI director Jan Geissler stressed out that there are still too many empty seats in R&D and with help of EUPATI patinets will be finally ready to take them and have impact on the development.

Participants were looking to the future: 2020 and three years beyond. „A lot of existing best practices examples on learning resources were shared and discussed. Speakers together with the audience took a closer look at current patinet involvement in research and talked about the future objectives,“ Buzermaniene said.

To learn more about EUPATI check these learning projectsBuilding reasearch partnership and ECRAN, and these patient involvement projectsINVOLVE, European Community Advisory Board (ECAB) and Medicines for Children Reasearch Network.


Results of SINPHONIE project presented

On April 23 results of the SINPHONIE project were presented to stakeholders at the European Parliament. The project is focused on monitoring indoor air quality in schools and kindergartens in Europe where the ventilation is very often inadequate. This causes increased risk for asthma and other respiratory diseases among pupils and is therefore of particular interest to EFA. Thanks to the research carried out in hundreds of school buildings all around Europe, scientists can now recommend concrete policy actions to be taken.

At the event hosted by MEPs Elisabetta Gardini and Erik Banki researchers showed that children may experience asthma symptoms, stress and attention problems at schools and that their symptoms improved at home. This was proven to be a consequence of the excessive presence of PM2.5, benzene and other pollutants in the indoor air they breathe. The project members drafted guidelines that should be adopted by policy makers and adapted at the national levels. The guidelines will be available for the public and policy makers soon.

EFA was represented by Executive Officer Susanna Palkonen and by EU Policy Officer Roberta Savli who participated in the panel discussion as a member of the Executive Committee of the Health and Environment Alliance (HEAL).

The panel discussion was preceded with the intervention of the Vice-President of the European Parliament, Mr. Pittella who supports prioritising IAQ. It was emphasised that the EU needs to develop a strategy on indoor air quality as a comprehensive topic that encompasses several other EU policies and initiatives and EFA strongly agrees.

More information about the project can be found here.


EFA took part in the MovingLife Stakeholders Conference 

On April 18 EFA’s Susanna Palkonen attended on behalf of the European Patients’ Forum (EPF) the MovingLife Stakeholders Conference in Brussels. The MovingLife project, supported by the EC Directorate General Connect, aims at delivering roadmaps for technical research, implementation and wider acceptance of mobile mHealth solutions among patients, healthcare professionals and policy makers in Europe.

Participants from various domains were able to discuss developments in the perception of mHealth, legal and policy framework in the EU, technological problems and also patients’ perspective. At the conference Susanna presented on behalf of the European Patients’ Forum (EPF) on patients’ perspective of mobile health, based on the results of the EPF Chain of Trust Project.

The Chain of Trust project started off in January 2011 and is focused on raising awareness and acceptance of telehealth end users. Results of the project can be also applied to the mHealth environment. According to EPF telehealth could improve quality, continuity and accessibility of healthcare and reduce health inequalities by reaching patients living in underserved areas. However, it is important to note that deployment of mobile health has to be user driven not technology driven.


The main key drivers for users’ acceptance of mobile health were thus identified as follows: telehealth should increase mutual trust between patients and health professionals, it needs to deliver benefits and add value to users in relation to solely conventional healthcare and it has to guarantee the same safety and reliability standard as conventional health services.

EPF’s presentation on the Chain of Trust project is now being integrated together with other comments and recommendations from the conference into the consolidated roadmap of the MovingLife Project. An action plan for future widespread of mHealth will be published shortly.

If you want to learn more about the Chain of Trust project, check out this website or watch the video on-line.


More meetings

EFA representatives also attended the EFPHIA Think Tank event, which was devoted to a dialogue between patients’ organisations and the pharmaceutical industry on EU policy issues in the area of health and innovative medical research. At the end of the month EFA president Breda Flood took part in a council meeting of the European Lung Foundation in Zurich and EFA executive officer Susanna Palkonen represented patients at the GSK’s (GlaxoSmithKline) European Health Advisory Board meeting in London.

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