For most of the year, our EUPATI National Teams and Platforms (Networks) work tirelessly on patient involvement issues in their respective countries. Interaction between Networks in different countries is thanks in part to early morning teleconferences, Facebook article sharing, and 140 character tweets to support each others events. But for one day each year, EUPATI organises for the hard-working Network members to come together in person to share their experiences of driving patient involvement nationally and to identify best practice in tackling the challenges and the opportunities for patient advocates in their countries.
This year, an unusually sunny Ireland served as the location for this exciting event; with patient, academic and industry representatives from eight countries [UK, Ireland, Spain, Italy, Austria, Switzerland, Poland and Malta] travelling to attend the one-day Workshop in Dublin Castle.
This was the third Workshop of its kind, and on this occasion, attentions focused on the eagerly-anticipated Research Advocacy Toolbox. The Toolbox is currently under preparation and it will be officially launched in January of 2016. Mindful of the wealth of experience contained within its National Networks members, the project was keen to already share a first glimpse of the educational and training content. In the morning, workshop participants engaged in a review of draft Toolbox content, and in the afternoon, they turned their minds to help adapt content from the existing EUPATI patient expert training course into patient-accessible content for the future Toolbox.
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Asked about the importance of patient education and involvement and EUPATI, Irene Oldfather, a participant at the workshop, chair of the EUPATI National Platform in the UK, and Director of the Health and Social Care ALLIANCE in Scotland, suggested that through its educational and training tools, EUPATI “allows patients to become experts; which as a patient organisation ourselves, we feel really helps level the playing field by supporting, empowering and assisting patients”.
Talking about the Toolbox specifically, Filippo Buccella, President of Duchenne Parent Project noted the “tremendous potential which exists to provide patients with the information and knowledge they need to take their place within the medicines research and development process”.
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National Networks will be working in the coming months to prepare patient communities in their countries for the arrival of the Research Toolbox in early 2016. Among the ideas proposed were a number of surveys to identify national priorities for patient learning in the field of medicines research and development. Seeking to always work in partnership, national Networks will work with national experts to soon deliver workshops, roundtables, information fairs, seminars, debates and conferences on topics ranging from clinical trial protocols to informed consent to patient participation in ethics committees and health technology assessments.
Follow your national team on twitter, and join the debate: @EUPATI_UK, @EUPATI_Fr, @EUPATI_Esp, @EUPATI_CH,@EUPATI_LUX, @EUPATI_IT
