- This agreement will promote and monitor the impact of citizen participation throughout the development cycle of innovative therapies
- Based on a close and continuous collaboration between researchers and patient associations, it will be possible to propose real solutions to real needs.
- Matching with the World Day of Social Justice, this joint project between two organizations whose mission is to support patient associations, promote research in health and disseminate scientific knowledge begins
MADRID, 20th of February, 2023. – The participation of patients throughout the pharmaceutical cycle is gaining more and more prominence. Public administrations, scientific societies and promoters of clinical trials with the commitment to improve clinical practice recognize the importance of integrating the opinion of the end user into their decision-making processes and this requires that society, associations and their representatives know the different stages and existing collaboration opportunities, as well as in-depth knowledge of what it means to live with a diagnosed disease, of the methodologies for recording what patients feel and of the formats for sharing it, work that EUPATI-Spain and Weber Foundation for years.
This agreement establishes a collaboration between EUPATI-Spain and Weber Foundation in order to promote and monitor the impact of citizen participation in the pharmaceutical R&D cycle, giving rise to the joint organization of different training activities (conferences, colloquiums, Webinars, etc.), scientific dissemination, debate and strategic analysis.
Alvaro Hidalgo, president of Fundación Weber, said: “this agreement is an excellent opportunity opens up to collaborate with patient associations to develop projects, programs and research, innovation and dissemination activities, mainly in relation to new technologies sanitary, understanding by the same procedures and techniques of diagnosis and treatment, medicines, protocols/clinical guides, systems and/or organizations. This collaboration will mean the convergence between the experiences reported by the patients, through the intrinsic knowledge of EUPATI-ESPAÑA, and the experience and scientific rigor in the field of economic research in health of the Weber Foundation to facilitate access to the therapeutic innovations“. Likewise, Roberto Saldaña, director of innovation and citizen participation of EUPATI-Spain points out that “for EUPATI it is very important to be able to count on partners such as the Weber Foundation, an exemplary, well-run and prestigious institution that complements EUPATI-Spain to the perfection. We understand that this agreement will lead us to an improvement in the knowledge and participation of society in the R&D and regulatory processes”.
In the short term, both entities will launch a Training Program fotr the patients and related to the basic principles of applied health research. The interactive Maps of Clinical Trials will also be launched, which monitor in real time the number of clinical trials in progress, by autonomous community and hospital, therapeutic area and phase. This innovative tool will improve the patient recruitment process, facilitate access to information of great importance for decision-making, improve the exchange of information between clinicians and ultimately contribute to improving access to therapeutic innovation.
EUPATI (European Patient Academy for Therapeutic Innovation) was born as an IMI (Innovative medicines initiative) initiative made up of representatives of patient organizations, the pharmaceutical industry and academic institutions. It is currently led by the European Patient Forum (EPF) and focuses its activity on education and training to increase the ability of patients to understand and contribute to drug research and development; and at the same time improve the availability of objective, reliable and easy information for the public.
Its implementation in Spain began in 2012 through a working group, in the field of Spanish patients, although it was not until December 2014 when the Spanish National Platform was finally constituted and until March 2017, after a period of consultations. and meetings, when the national platforms of each country begin to work independently, seeking to cover the needs of each country. Since then, the activities of communication and dissemination of EUPATI activities have been constant, both in the associative field, as well as in the business and academic-researcher field throughout the national territory.
The Spanish Platform Association of the European Patient Academy for therapeutic innovation EUPATI-ESPAÑA is registered in the National Registry of Associations in Section 1, number 616532.
About Weber Foundation
In 2017, Weber, Economía y Salud established the Weber Foundation, in order to promote economic research in health and promote projects that contribute to the sustainability of the National Health System and/or improve the quality of life of the patients. The Weber Foundation represents the evolution of the Max Weber Institute, which since 2005 had been carrying out projects of these characteristics, and also the consolidation of its work in health matters with a more appropriate legal form for the purposes it pursues. With the creation of the Weber Foundation, the Weber Group is configured as a benchmark for research, consulting and training in the field of health economics, the results reported by patients and pharmacoeconomics.
One of the priority lines of the Foundation is to analyze the social impact of the different pathologies and present initiatives from other countries that make it possible to improve health management in Spain. For this reason, the Weber Foundation will promote institutional cooperation projects, this agreement being a faithful example of this, understanding that collaborations of this type constitute a key element in the integration of knowledge and perspectives, and to incorporate patients in decision-making. decisions effectively.
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