While patients are keen to have access to better and safer treatments, many find it hard to understand the benefits and risks of novel therapies. With demand for healthcare rising, and a growing emphasis on both the quality and sustainability of healthcare services, there was a proven need for information resources, designed specifically for patients and the public, on how medicines research and development (R&D) and clinical trials are conducted. By bringing together major patient organisations, academic institutions and industry partners, EUPATI set out to address this major gap in public perception and knowledge.
One of the main project outputs is the development of the Patient Expert Training Course – a 14-month in-depth course for patient advocates on medicines R&D. Almost 100 patients from 32 countries and 58 disease areas have already graduated from the course, and more are on the way. In order to multiply the effect of this course, the project has also developed a ‘train-the-trainer programme’.
Toolbox and national platforms
Another important project output is the toolbox on medicines R&D which is available in eight languages on the EUPATI website. It includes articles, presentations, videos, webinars, factsheets, and much more. It already has been used by more than 500 000 people worldwide.
The project also established 18 national platforms which are based on the same model as EUPATI. By organising educational webinars, information days, workshops, and social media campaigns, the platforms have enabled patients on a national level to become more involved in medicines R&D, and regulatory affairs.
Guidance documents and other achievements
Other important project outputs include:
- guidance documents for the engagement of patient organisations in industry-led R&D, health technology assessment bodies, regulatory processes, and ethics committees;
- the organisation of interactive annual conferences and workshops which have attracted about 1 200 participants, about 50% of them patient advocates;
- the organisation of educational webinars on a variety of relevant topics.
Patient voices already being heard
Through all these activities, EUPATI has been a catalyst for patient involvement in medicines R&D and continues to be one of the key drivers of the public debate on this topic in Europe and beyond. EUPATI fellows are engaged in regulatory committees, as speakers on medical conferences, and are participating in regulatory and ethics committees. As a result, clinical trials are changing shape, trial outcomes are being defined differently, and patient voices are being heard in regulatory discussions.
Patients are also benefitting from a large patient network which was established as part of this project. Patient organisations are usually volunteer-driven, low-resource organisations and before EUPATI they didn’t have the capabilities to work together across different disease areas. Thanks to EUPATI, this has finally changed, and has been a game-changer in patient advocacy.
Benefits to academia and industry
The academic community benefited from the project by getting a neutral platform to collaborate with the industry, regulators and patient organisations. Also, a lot of publications co-authored by academics were published in high-impact journals which contributed to increasing their reputation and visibility.
The industry benefited from the collaborative network that was established, and from having access to patients who are familiar with all the aspects of R&D and can help in the drug development process with their perspective.
Even though the project ended, thanks to a three-year sustainability plan, the main project outputs (the course, the toolbox, national platforms) continue to be maintained. Furthermore, several project partners are continuing to collaborate and initiate new projects.
Read the interview with project coordinators