EU-PEARL plan to foster patient engagement in the design of the platform trial framework takes off

Patient centricity is at the core 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 EAG 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 work streams.

In order to maximise the work of the EAG, the European Patients Forum (EPF) 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.

Lastly, we will also launch a call for testimonials from people that have participated in clinical trials.  The call for testimonials will enable us to hear first-hand feedback on what has gone well and what could be improved and will be integrated into the way we communicate and engage with patients during the project. This call will be launched on the EU PEARL and EPF social media accounts. Stay tuned!

Learn more about EU-PEARL potential benefits for patients here.