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EU PEARL: A plan to foster patient engagement gets off the ground

May 2020

Patient centricity is at the centre of EU PEARL’s mission. That is why we are engaging with patients from the start to co-design the platform trial framework, thus bringing on board more patient-relevant outcomes. Making clinical trials more efficient and patient friendly can ensure that individuals find the clinical trial that matches their needs, that companies enrol enough patients, and eventually, that new treatments are evaluated in better ways. Ultimately, we hope that this patient-focus will not only improve, but will also accelerate drug development processes, bringing about new and more effective treatments, faster.

One of the ways we are ensuring that patients remain active and at the centre of everything we do is by inaugurating two consultative bodies – a Patient Advisory Group (PAG), and an Expert Advisory Group (EAG) – which will consult on the work of EU PEARL and the design of the platform. The Patient Advisory Group PAG will reinforce the patient voice and will be made up of representatives from the four focus disease areas (major depressive disorder, tuberculosis, non-alcoholic steatohepatitis and neurofibromatosis) covered by EU PEARL, plus some representatives that are not associated with a condition. The Expert Advisory Group will be composed of representatives from disease-specific Work-Packages of the project, plus colleagues from other Work Packages. EAG members will act as ambassadors for patient engagement for their workstreams.

In order to maximise the work of the EAG, the European Patients’ Forum will arrange for an online training workshop on patient engagement for the members of the advisory groups. The workshop, called EUPATI Fundamentals, will be run by the European Patients’ Academy on Therapeutic Innovation (EUPATI). EUPATI is comprised of training experts that are specialised on engaging patient groups appropriately. EPF will also assess the needs of PAG members and address them with a tailored training offer.