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 all aspects 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.