The patients’ perspective at DIA Euromeeting

Picture: DIA EuroMeeting 2015, Nicola Bedlington, Paris, France © Jan Geissler

The 27th edition of the Drug Information Association (DIA) EuroMeeting took place in Paris, France, on 13-15 April and was entitled Development, Innovation, Access and Patient Safety”. Patients were very active at the Meeting and four major issues for the European Patients Academy were discussed.

Four major working issues within our project, the European Patients Academy EUPATI, were presented and discussed in parallel:

  • A good model of participation and interaction with patients and patient organisations has already been developed about engagement with regulators by the European Medicine Agency, presented by Isabelle Moulon.
  • According to Matthias Gottwald from Bayer, pharmaceutical industry codes are gaining momentum due to the intense collaboration carried out within the European Patients' Academy structure itself and are rapidly moving towards a more patient-focused approach.
  • The Health Technology Assessment (HTA) framework has shown a long history of patient involvement although many of the advancements are in preliminary stages, according to Karen Facie from HTA International.
  • A big challenge remains in getting the patient into ethics committees. Due to a lack of regulations and of a proper structure where experiences can be exchanged between countries the situation is very fragmented and the debate to establish a common framework of interaction is still in the early stages. “This remains one of the biggest challenges for patients”, according to Andrea Heckenberg from the EUPATI Ethics Panel.

The session on “Participatory Society”, chaired by Jan Geissler , Director of EUPATI provided an overview of the level of patient involvement across public-private partnerships in the Innovative Medicines Initiative. Ms. Bedlington, EPF Secretary General presented EUPATI as an example where and how patient involvement can become reality in the research and development of medicines, and underlined the importance embedding patient involvement in more IMI projects. In the same session David Haerry shared the experience of the European Community Advisory Boards in the framework of EATG as an early exemplar of the difference patient involvement can really make.

Ms. Bedlington spoke on the concept of meaningful patient involvement at a session on “Regulatory Science”. This topic is,in relation to medicines development, has been a field of growing interest for regulators and the pharmaceutical industry for a number of years.

She said: “We need a more systematic approach to ensure the right patient leader, with the right knowledge base and skills set can engage optimally in regulatory science, as well as other environments”.

At a session on the new role of social media in medicines research, Nicola highlighted the challenges and the opportunities. “New online platforms have revolutionised the way patients are accessing information and are sharing experience. The Internet won't go away so only good information can replace bad information, so we must focus on quality information and capacity-building rather than restrictive policies” she said.

Contact: Nicola Bedlington, EPF Secretary General,