On 29 June, around 25 representatives from Polish patient associations, government and academic institutions and pharmaceutical companies gathered to launch EUPATI Poland. Introducing the initiative, EUPATI Poland chair and Federation of Polish Patients president emphasised the importance of providing patients with the information and the skills they need to become actively involved in various aspects of medicines research and development. EUPATI Trainee and FPP Director Witold Michalek shared his experience of taking part in the 14-month EUPATI Patient Expert Course and provided a live navigation of the EUPATI Toolbox – our online resource for patients with more than 3000 pieces of content available in seven European languages including Polish! Videos of the event can be found here.
On 14 July, EUPATI Austria formalised a legal association of the public-private partnership between Austrian patients, academics and industry. Members agreed a governance structure and initiated strategic planning for activities in 2017 and beyond. Two EUPATI Austria training events for patients interested in clinical research in paediatric medicine will be held later in autumn, details on https://www.facebook.com/Eupati.Osterreich/ and https://twitter.com/eupati_at.
On 8 August, EUPATI Norway hosted an inaugural meeting to officially establish a partnership between patient (EUPATI Trainees), academic and industry (Novartis) representatives. EUPATI Norway will focus on growing a wider network of national partners; on reaching out to government officials, regulators and healthcare professionals; and on sourcing funds to support patient education in Norway.
In July, EUPATI Spain again met with the Spanish Medicines Agency (AEMPS) to explore avenues for future cooperation and funding. The meeting followed a successful joint workshop on patient involvement hosted in May and both AEMPS and EUPATI have committed to even closer collaboration in 2017 to support new patient education initiatives. On 15 September, EUPATI Spain shared the EUPATI Toolbox with participants attending the CIBERER event ‘Clinical Research in Rare Diseases’. A copy of the programme can be found here. On 29 September, the governing board of the Spanish Patients Forum voted EUPATI Spain to officially become part of the Forum, which will now allow EUPATI Spain to work on an action plan into 2017 that includes a series of educational meetings with the Spanish Medicines Agency! More in next month’s edition.
On 15 September, EUPATI Italy and EUPATI Trainee Paola Kruger presented at a Celgene event, ‘The future of Clinical Research and it’s value for the Patient, the Health system and the Country’. More details and a copy of the report produced by the European House-Ambrosetti for Celgene can be found here.
On 24 September, EUPATI Fellow, Stefano Mazzariol shared the EUPATI Toolbox with members of the Italian Diabetes Forum. At the event, knowledge of medicines research and development based on a quiz increased from 41% to 91% after using the Toolbox!
On 26 August, EUPATI Ireland delivered a two-person presentation to delegates at the 32nd International Conference on Pharmacoepidemiology & Therapeutic Risk Management. ENP Chair and IPPOSI Chief Executive, Derick Mitchell, was joined on the podium by EUPATI Fellow, Rachel Lynch who shared her patient journey and her experience of patient education and patient involvement.
Articles, endorsements and news about the Toolbox continue to appear on a variety of patient organisation and partner sites across Europe. Anyone interested in linking to www.eupati.eu from their organisation’s site can contact email@example.com or firstname.lastname@example.org for website banners.