In recent years, the importance of involving patients and the public in their healthcare has been increasingly recognised. The increased accessibility of healthcare information, availability of technology and growth in self-management of health problems have led to better informed patients more willing to contribute to their care.
The pharmaceutical industry has also recognised the importance of PPI in medicines R&D and the need to make the medicines R&D process more patient-centred. In a recent survey, 85% of respondents believed that the best approach to securing the sustainability and profitability of the pharmaceutical sector was increasing the patient centeredness of its processes. Patients are believed to increase the usefulness and sustainability of medicines R&D, by promoting innovation and providing new insights and solutions.
The importance of increasing PPI in, and the public’s knowledge of, medicines R&D has been recognised by the European Commission and the Innovative Medicines Initiative in their funding of the European Patients’ Academy on Therapeutic Innovation (EUPATI) project. EUPATI aims to increase PPI in and public knowledge and understanding of medicines R&D across Europe. EUPATI is a consortium project, led by the European Patients’ Forum, with 30 project partners across Europe from patient organisations, academic institutions and pharmaceutical companies.
Patients are believed to increase the usefulness and sustainability of medicines R&D, by promoting innovation and providing new insights and solutions. In recent times, the pharmaceutical industry has faced a number of challenges which have highlighted the need to increase the sustainability of medicines R&D. Patients insights have a huge impact on pharma, especially when it comes to rare diseases, with PPI drastically reducing costs for pharma
Experience of medical research appears to play a key role in increasing public awareness of and future interest in medicines R&D. Some groups may need to be specifically targeted to increase their awareness of medicines R&D, for example, women expressed great interest in learning more but reported less knowledge than men. It may be useful to explore further the views of those who are currently uninterested in learning more.
First, public interest in medicines R&D was greater than public knowledge, which suggests that attempts to increase public knowledge will be welcomed. However, there are limits to public interest because at most 60% of respondents were interested in learning more about a particular aspect of medicines R&D. Therefore, EUPATI may have a role in stimulating the public’s interest in medicines R&D. Second, having previous experience of medical research appeared to either increase both current knowledge or interest in learning more about medicines R&D or may mean that a person approached is more likely to consent to participate in medical research. However, raising awareness of medicines R&D should be focused on fostering informed choice regarding participation and involvement rather than on increasing trial recruitment. Third, existing patterns of trial recruitment may impact on knowledge and future interest in medicines R&D, that is, there are groups who are currently under-represented in clinical trials who may be very interested in learning more, such as women and older people. Fourth, patients’ and the public’s awareness of many aspects of medicines R&D may be so low that they may not feel they have a need to learn more.
Finally, without increasing patients’ and the public’s knowledge and awareness of their roles in the medicines R&D process, it will be challenging to facilitate their more active involvement in the medicines R&D process.