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For anyone who has followed the progress of EUPATI, the European Patients’ Academy on Therapeutic Innovation, from its early beginnings, the project’s first full conference with a 183 participants, held in Rome on 19 April 2013, was a revelation.
Barely two years ago the idea was a mere gleam in the eye, an idea floated in discussion in the PatientPartner project. Patients, so the idea went, need training and education to enable them to play a full part in the medicines research and development (R&D) process. The notion was simple and, once stated, obvious. But equally obvious, and immediately understood, was that to bring this simple idea to reality would be inherently and perhaps impossibly complex.
The Rome conference, held just 14 months after the launch of EUPATI, showed just how far the idea had developed. More than 180 delegates from 28 countries were there to hear about the plans under way for three clear areas of training and education: a certificate level course that by 2017 will produce 100 patient experts drawn from across Europe; less detailed online education for 10,000 patient representatives; and an Internet library with information for anyone with an interest in medicines R&D– hundreds of thousands of people, perhaps millions.
Delegates heard a series of presentations outlining the vision of the project and a number of talks from people around Europe who have been implementing innovative practices in patient partnership.
The atmosphere was positive, and for good reason. As several speakers said, there is now a “window of opportunity” for effective patient involvement in medicines R&D. All the stakeholders understand the huge benefits that can flow to them, from early research discussions, to better trial designs, more meaningful patient involvement in HTA and regulatory processes, and ultimately a quicker stream of properly tested and adapted innovative medicines.
But along with the opportunity comes the threat that there may be too few properly trained patients to take advantage of the seats that it is hoped will be available at the tables where trials are designed and scrutinised, and where decisions on access will be made.
So the Patients’ Academy is more than a desirable aim: it is both crucial and urgent. And as delegates heard, a number of hard decisions have had to be made to move the project forward. Lacking the resources to replicate the project in every country and every language of the European Union, EUPATI has had to restrict itself in order to make the Patients’ Academy a practical possibility.
The certificate level course will be English only; online education and the Internet library will be developed in the seven most frequently spoken languages in Europe – English, German, Spanish, Polish, French, Italian and Russian (not strictly a European language, but widely spoken by older people in central and eastern Europe). The lynchpin of the project, the National Platforms which will do the work in their own countries, will be established in 12 countries only.
There were few illusions about the scale of the task. More work is needed on presenting the projects aims and its value also to lay patients. The broad outlines of the content of courses and material have been established, but finding the right way of teaching them will prove more of a challenge – as will selecting 100 people from across Europe. Even translation into the chosen languages poses problems when, for example, there just isn’t a term for “randomisation” in some languages. The audience learned why ethical oversight and transparency are fundamental to the EUPATI project and how these concepts are applied in practice. So-called “soft” communications skills are also crucial if partnerships between patients, researchers, industry and regulators are to be as fruitful as possible.
An overarching concern is sustainability. The project is funded by the European Commission’s Innovative Medicines Initiative, but only to 2017. By then the European Patients’ Academy must have established sufficient roots to carry on, along with ways of ensuring that the courses and information it offers continue to be relevant and up-to-date. But going by the conference in Rome, that seems to be a challenge that many will relish.
Read our in-depth report of the conference and get more interesting insights on the presentations, discussions and feedback of the participants.