Medicines research and development (R&D) is an increasingly complex process that remains a mystery for the majority of patients and the general public. Lifting the lid on the medical R&D process is the IMI-funded EUPATI project. EUPATI is a patient-led initiative that aims to develop the first European Patients’ Academy on Therapeutic Innovation, with training courses, educational material and an online public library that will empower patients to engage more effectively in the development and approval of new treatments and become true partners in pharmaceutical R&D.
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, it is critical to address this major gap in public perception and knowledge.
There is therefore a proven need for information resources, designed specifically for patients and the public, on how medicines R&D and clinical trials are conducted. This should cover diverse aspects of pharmaceutical research and innovation, including translationalresearch and personalised and predictive medicine, as well as the ways in which patients can support the research process and contribute to therapeutic breakthroughs. Well-informed patients are not only better placed to understand and make decisions about their treatments, but can also help to put patients’ needs at the heart of drug development, for example by joining scientific, ethical and regulatory committees and getting involved in clinical trial design.
Power to the patients
The Patients’ Academy will produce comprehensive, scientifically reliable and user-friendly information for patients on the of medicines development. It will increase the capacity and ability of well-informed patients and patients’ organisations to be effective advocates and advisors in medicines research. The patient-led consortium, which includes patients’ organisations, academic groups, non-governmental organisations (NGOs) and pharmaceutical companies, will generate educational resources in six key areas, namely the medicines development process; personalised medicine; drug safety and risk/benefit assessments; health economics and health technology assessment; clinical trials; and patients’ roles and responsibilities in medicines development. Material will be developed in English, French, German, Italian, Polish, Russian, and Spanish.
Objectivity, transparency and independence are essential if EUPATI is to achieve its goals. The project’s robust governance structure includes a multidisciplinary Project Advisory Board, a Regulatory Advisory Panel, and an Ethics Panel comprising renowned experts in bioethics, law, genetics, drug development, and patient advocacy, as well as representatives from regulatory authorities.
The project addresses three audiences. The ‘Expert Level’ will deliver a EUPATI Certificate Training Programme for patient experts, patient ambassadors and patient journalists. The accredited qualification will ensure that patients have the expertise and capacity to collaborate with all stakeholders involved in medicines R&D, wherever a strong patient voice is needed.
Advocacy leaders from patients’ organisations will be encouraged to access the ‘Education Level’ material in the EUPATI Toolbox. This will include a diverse range of cutting-edge resources such as e-learning courses, webinars, videos, slide shows for presentations, print material and face-to-face meetings.
Finally, all patients and the wider public will gain access to the EUPATI Internet Library, which will guide patients, including those with relatively low health literacy, through the complexities of the pharmaceutical R&D process.
Patients: industry’s partners in drug development
Involving patients in research can hugely benefit the drug development process; patients bring their own priorities and perspectives to the table and can offer fresh insights and challenge long-held beliefs, often resulting in entirely novel ideas and leading to better treatments for patients. Furthermore, greater patient involvement in R&D will boost the efficacy and safety of new treatments and raise public support for medical research.
Inducing a paradigm shift in patient involvement in medicines R&D
The Patients’ Academy is set to trigger a major rethink in the way patients and the public view the medicines development process and their own involvement in it. Armed with a deeper understanding of how the pharmaceutical sector works, patient experts and advocates will be empowered to work effectively with the relevant authorities, agencies, clinicians and industry to influence the drug development process for the benefit of patients.
Achievements & News
First EUPATI public workshop attracts over 100 participants
Over 100 people from 24 countries signed up to IMI Education & Training project EUPATI’s inaugural public workshop, which was held in Frankfurt, Germany in early September. ###The goal of the event was to gather feedback on the initial findings of the project, which aims to create a European Patients’ Academy on Therapeutic Innovation. ‘Nothing is set in stone,’ commented Project Coordinator Nicola Bedlington of the European Patients’ Forum. ‘We have a framework and clear ideas, but the input of all participants, being experts with different backgrounds and form different geographical areas, is absolutely vital to shape what we do. The floor is open.’ Items on the agenda in Frankfurt included how to raise awareness of EUPATI, how to establish national platforms, how to enhance the collection of information, and how to ensure that as many patients as possible benefit from the information generated by EUPATI. A full report of the workshop, as well as photos and webstreams from the workshops, are available from the project website.
Join the EUPATI Network
EUPATI (the European Patients’ Academy on Therapeutic Innovation) is inviting people to join the newly-created EUPATI Network. ###Open to patients and patient organisations, caregivers, academia, pharmaceutical & biotech companies, journalists, and anyone else interested in finding information on medicine research & development in lay language, the network offers members a number of benefits. In addition to information on EUPATI activities, events and networking opportunities, network members will also receive invitations to participate in EUPATI surveys or focus groups and will have the opportunity to collaborate with other network members, for example on the organisation of national events. Membership of the EUPATI Network is free of charge.
- European Patients’ Forum (EPF), Luxembourg
- European AIDS Treatment Group (EATG), Düsseldorf, Germany
- European Genetic Alliances Network (EGAN), Brussels, Belgium
- European Organisation for Rare Diseases (EURORDIS), Paris, France
EFPIA member companies
- Amgen Belgium SA/NV, Brussels, Belgium
- AstraZeneca AB, Södertälje, Sweden
- Bayer Pharma AG, Berlin, Germany
- Boehringer Ingelheim International GmbH, Ingelheim, Germany
- Chiesi Farmaceutici SpA, Parma, Italy
- Eli Lilly and Company Ltd, Basingstoke, UK
- F. Hoffmann-La Roche Ltd, Basel, Switzerland
- Farmaindustria, Madrid, Spain
- GlaxoSmithKline R&D Ltd, Middlesex, UK
- Janssen Pharmaceutica NV, Beerse, Belgium
- Laboratorios del Dr Esteve, SA, Barcelona, Spain
- Merck KGaA, Darmstadt, Germany
- Novartis Pharma AG, Basel, Switzerland
- Novo Nordisk A/S, Bagsvaerd, Denmark
- Sanofi Aventis R&D, Chilly-Mazarin, France
- UCB Pharma SA, Brussels, Belgium
- Verband forschender Artzneimittelhersteller eV, Berlin, Germany
Universities, research organisations, public bodies, non-profit groups
- Biopeople / Copenhagen University, Denmark
- DIA Europe GmbH, Basel, Switzerland
- European Forum for Good Clinical Practice, Brussels, Belgium
- European Organisation for Research and Treatment of Cancer, Brussels, Belgium
- Hibernia College, Dublin, Ireland
- International Society for Pharmacoeconomics and Outcomes Research Inc., New Jersey, US
- Irish Platform for Patients' Organisations, Science and Industry, Rathmines, Ireland
- Nowgen / University of Manchester, Manchester, UK
Facts & Figures
|IMI funding||5 300 000|
|EFPIA in kind||4 800 000|
|Total cost||10 100 000|
Tel: +49 89 66086968
Project Coordinator & Managing Entity
European Patients’ Forum
Tel: +32 2 280 2334
Verband forschender Artzneimittelhersteller
Tel: +49 30 2060 4143