EURORDIS contributes to EUPATI initiative for training patient experts in medicine research and development processes

EUPATI logoEURORDIS actively contributes to the European Patients’ Academy on Therapeutic Innovation (EUPATI) that launched in 2012, funded by the European Commission’s Innovative Medicines Initiative (IMI). In April 2013, EUPATI welcomed over 180 delegates from 28 countries to Rome to learn more about initiatives underway. One of these is the development of a programme for training 100 patient experts from across Europe in the medicinal product development process. EURORDIS is contributing to this initiative, bringing several years of experience training patient advocates via the EURORDIS Summer School and other resources to be more active and empowered in the areas of medicines development and regulatory processes.

The EUPATI programme will be complemented by online education destined to train 10,000 patient representatives, and an Internet library offering reliable and accurate information to all persons interested in medicines research and development. The online training and library will be made available in English, French, German, Italian, Polish, Russian and Spanish. 

The atmosphere in Rome was positive - and for good reason. As several speakers remarked, there is currently a “window of opportunity” for introducing more effective patient involvement in medicinal product research and development. The enormous benefits identified from this include participation in early research discussions, better trial designs, more meaningful patient involvement in Health Technology Assessment and other regulatory processes, and ultimately a “quicker stream of properly tested and adapted innovative medicines”. 
It is crucial that there be adequately trained patients to take a seat at the tables where trials are designed and scrutinised, and decisions on access are made.

Although major advances have been made, more work is needed, particularly to communicate the project’s aims and value to lay patients. Other discussions included determining the best way of teaching the courses, for which the contents and materials have generally been established, and translation, which can also pose problems. There may not be a simple term for “randomisation” in every language!

Other relevant conference topics included ethical oversight and transparence, communication tactics to best facilitate partnerships between patients, researchers, industry and regulators, and sustainability. EUPATI is funded up to 2017 and needs to establish sufficient roots to carry on, and to ensure that courses and information are relevant and up-to-date. Judging from the enthusiasm at the Rome conference, stakeholders are up for the challenge!

Louise Taylor, Communications and Development Writer, EURORDIS

Page created: 22/05/2013
Page last updated: 21/05/2013
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases