That patients should be at the very heart of the medicines development process is no longer a matter for dispute. Just as a chef may refine a dish to accommodate the tastes of discerning diners, so do researchers approach the needs of the educated patient to develop better, more effective therapies. The point is that if patients are involved from the outset, they will better understand and help shape the medicines that are best suited to their health needs and priorities.
The European Patients’ Academy (EUPATI), a patient-led pan-European Innovative Medicines Initiative project, links patient organisations, universities and not-for-profit organisations, together with a number of European pharmaceutical companies, to deliver on this principal goal. We focus on education and training to improve the availability of patient-friendly information for the public as well as for patients and more advanced patient experts to give them the capacity and capability to understand and contribute to medicines R&D across the whole development life cycle.
EUPATI itself was launched on 1 February 2012. By October 2014, we made a major leap forward when we kicked off our EUPATI Expert Patient Training Course, a key educational programme, designed specifically to meet the needs of patients and patient advocates and to impart expert-level knowledge about the whole spectrum of the medicine research and development process. It has been a resounding success: 46 trainees completed the course successfully in January 2016, and we had only a small number of drop-outs due to the lack of learning progress. More than 200 patient advocates applied for the second course, and 59 of them from 33 countries are currently in training.
There are, understandably, some dissenting voices and suspicions raised about EUPATI’s independence as a public-private partnership. Is it acceptable to be sceptical about the industry/patient relationship? Of course it is. However, EUPATI has taken all measures, supported by independent advisers from regulatory agencies, academic groups, ethics panels and HTA bodies, to make sure its content is neutral, objective and well-balanced. Groundless accusations of a hidden agenda and needless suggestions of underhand dealings are just a distraction from empowering patients to be able to challenge all partners involved in medicines research, including industry. They do nothing to contribute to improved patient healthcare.
So our bottom line is this: judge us on what we create and on what we achieve.
For example, we have already received outstanding feedback about the first course – and you can see this from the glowing trainee testimonies on the EUPATI website. Some graduates have become involved in European Medicines Agency committees, industry research projects, ethics committees and academic research groups. We have contributed successfully to the making of competent, well-educated patient advocates in R&D.
Our latest offering, though will go even further in terms of revolutionising patient learning. On 27 January 2016, EUPATI launched its second “core product”: a new online Toolbox on Medicines Research & Development. It is designed to be used by patients and their representatives in their search for more information and educational material on how the medicines R&D process works. In a nutshell, it offers self-contained, self-explanatory, quality-controlled content in seven languages – and in user-friendly formats – on the A-Z of medicines development, including how to involve patients in the process. For example, it covers discovery research, clinical development, regulatory affairs, medicinal safety, pharmacovigilance and the principles of health technology assessment. Users can access a wealth of fact sheets, graphics, presentation slides, videos, recorded webinars, print-ready materials as well as a full glossary.
The materials can even be edited or modified to suit the user.
Just to give an idea of the colossal task that has been addressed: 3.000 content items (articles, images, presentations, fact sheets and interface strings) have been provided, with a total volume of 1 million words in the translation system. We have 40 external volunteer translation reviewers double-checking everything in the other languages before publication, and 100 test results have been incorporated before the final platform saw the light of day.
Only in the first two weeks, more than 8.000 individuals used the EUPATI Toolbox, accessing more than 30.000 content pages.
So EUPATI is producing and delivering! In short: a better-educated patient will lead to more patient-centric research and eventually to better healthcare outcomes of patients.3