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The consortium project "European Patients‘ Academy on Therapeutic Innovation" (EUPATI), funded by the Innovative Medicines Initiative, will provide scientifically reliable, objective, comprehensive information to patients on medicines research and development. It will increase the capacities and capabilities of well-informed patients and patient organisations to be effective advocates and advisors in medicines research, e.g. in clinical trials, with regulatory authorities and in ethics committees. More about the Patients' Academy
On 26 May 2014, the German news magazine SPIEGEL published an article addressing the issue of donations from pharmaceutical companies to patient organisations. The article also addresses concerns about EUPATI's objectivity and independence, while it also stresses the lack of technical knowledge of patients to be independent partners of stakeholders in healthcare. However, empowering patients to engage as independent and equal partners in medicines research in development is in fact the key objective of EUPATI, supported by distinct measures to ensure objectivity and transparency without getting involved with specific diseases or treatments.
Our recent meeting was not a simple conference, said Tomasz Szelagowski, from the Federation of Polish Patients, but a workshop – “a working event” to help the European Patients’ Academy devise strategies to equip Europeans with information and tools about how medicines are developed, and to encourage them to become more involved in the process. Read the full article here.
To evaluate our Warsaw workshop, we used online surveys, interviews, and event observation. While the evaluation is still ongoing, we are pleased to share some preliminary results of the two online surveys that gathered input from workshop participants external to the project (including members of the National Teams) as well as project team members. Both questionnaires, designed to assess whether and to what extent the objectives of this workshop were met, consisted of a series of statements that participants agreed to by means of a 5-point scale.
We wanted to explore the public’s knowledge, attitudes and understanding of medicines development; at the same time, we explored the public’s current awareness of and level of involvement in medicines development; finally, we tried to explore the public’s information needs and preferences for different types of information resources vis-a-vis medicines development.
In the following infographics, we show the combined results on a European level as well as for 6 countries - France, Germany, Italy, Poland, Spain, UK. All participants were aged 18 years and over. In total, 7000 members of the public were reached with the survey (2000 in the UK and 1000 in all other countries).
Do you want to learn more about the research and development of medicines? The European Patients’ Academy is inviting people to join the Network. Membership to the Network is free and open to anyone interested in finding information on medicines research & development. The Network offers members the following benefits:
You can join the European Patients’ Academy Network today by registering at http://www.patientsacademy.eu/register