The patient becomes co-protagonist: the Eupati training training
The experience of the "Patient Engagement in Research and Development of Innovative Therapies" course
di Annalisa Gebbia, AICARM member
When, a few years ago, I decided with my husband to actively participate in AICARM, I wondered how I could make a more constructive contribution to its development, how I could enrich my preparation on a subject as fascinating as it is complex. The concept of patient "at the center" that I have often heard pronounced seemed reductive to me, especially if not followed by concrete actions of involvement and participation. Instead, I was interested in a concept of a patient who is prepared, aware, eager to contribute, first being able to understand. For this reason I followed, between December 2021 and September 2022, the “Patient Engagement in Research and Development of Innovative Therapies” course.
What is EUPATI (European Patients' Academy on Therapeutic Innovation)
It was born in Europe in 2012 and arrived in Italy in 2018, thanks to the initiative of ADPEE, the Academy of
Patient Expert EUPATI, who is the first in Europe to translate and adapt the course from English to Italian.
This is a training training lasting 10 months and 160 hours remotely, plus 6 meetings with highly qualified speakers.
Course objectives and topics covered
The main objective of the course was to promote scientific research and actively involve patients and C.aregivers in the process of drug research, experimentation and development, so that they can interact constructively and consciously with the various decision-making bodies. The course is free, created with the support of AIFA, the patronage ofIstituto Superiore di Sanita e Anac and with the unconditional contribution of major pharmaceutical companies.
The program took place in 6 modules:
- Discovery and drug development planning
- Pre-clinical phase and pharmacological development
- Clinical exploratory and confirmatory development
- Clinical Studies
- Regulatory Affairs: role of the European Agency and role of AIFA
- Principles and practice of Health Technology Assessment
Why follow a training course on patient involvement in the research and development of innovative therapies
The patient today is a subject that fully participates in the research process; he is no longer a simple user of a clinical study, but a co-protagonist who can offer indispensable information for a research study. An Eupati Expert patient is a patient (or a caregiver) who undertakes an intense training course that allows him to understand and dialogue constructively with researchers and to actively participate in the research and development of innovative drugs and therapies. In EUPATI I found in-depth skills and programs and an environment full of very significant personal and associative experiences. It is a training course that I recommend to other AICARM members wishing to deepen these issues. Annual editions are planned, with new participants of which spontaneous applications are accepted. If interested, you can get information by writing to team@accademiadeipazienti.it