Driven by its mission to bring patient centricity to the core of the project’s activities, this year, EU-PEARL inaugurated a Patient Advisory Group (PAG) and an Expert Advisory Group (EAG). The PAG, which held its kick-off meeting on 16 September, is composed of representatives from the four project disease areas (NASH, Major Depressive Disorder, Neurofibromatosis, Tuberculosis), and other diseases areas.
This group aims to reinforce the patient voice in EU-PEARL, through consultation on the design of the clinical trials platform, and on other key project outputs including the Patient Engagement Platform to be implemented. The PAG will be coordinated by the European AIDS Treatment Group (EATG), a member of the European Patient’s Forum, which has been brought on board as a collaborating partner to EU-PEARL.
The EAG, held its kick-off meeting on 4 December. The group is made up of disease-specific work package representatives, as well as colleagues from other work packages. EAG members will act as ambassadors for patient engagement to ensure effective and meaningful involvement of patient advisors in their respective workstreams. To strengthen the capacity and skillset of the EAG, the European Patient’s Forum arranges training workshops on patient engagement and shares good practices and tools such as the recently released PARADIGM Patient Engagement toolbox.