The ultimate goal of patient engagement throughout the lifecycle of medicines is to develop safer, more effective therapeutic solutions for patients that closely match their specific needs, and to deliver them faster and more efficiently. The overarching mission of PARADIGM is to participate in the creation of a sustainable framework that allows structured, meaningful, and ethical patient engagement during three of the key decision-making points in the medicines development process; the research priority setting, the design of clinical trials, and early dialogues with regulators and HTA bodies.

This can only be achieved through collaboration and co-creation.

Thus the activities of PARADIGM during this first year focused on laying important groundwork that would deliver the most impactful outcomes and help it achieve its overall mission. Much emphasis was placed in gathering the perspectives of all stakeholders involved in medicines development; this took place via an online survey co-constructed to ensure that the needs from all work packages were covered. To ensure the perspectives of stakeholder groups difficult to reach through online surveys were captured, several focus group consultations were organised. The results of these activities were the basis for three Delphi exercises covering the three decision points addressed by PARADIGM. The results will be available soon, stay tuned!

Our consortium also focused on developing a sustainable roadmap aiming to address several dimensions of sustainability, such as resources, culture and processes. Due to its focus, nature and lifespan, PARADIGM cannot afford to duplicate the work of others and needs to trigger as many operational collaborations as possible. With this in mind, the PARADIGM International Liaison Group (PILG) was devised, created, and rolled out. In short, the PILG is an exchange and, when appropriate, a co-creation hub to connect PARADIGM with like-minded initiatives. The PILG enables synergies – through the identification of existing good practices – aligned with PARADIGM’s scope.

The PARADIGM consortium is on the right track to ensuring recognition of the main outcomes that will be produced during its second half, as it continues to make outreach efforts to the patient engagement community. PARADIGM is based on the premise that the ultimate impact of patient engagement will be a more robust response to true unmet medical needs; namely, medicines developed faster, safer and more cost effectively that will support healthcare systems to achieve better health outcomes. This is a win for all, a win for society at large.

March was an especially active month for PARADIGM and almost all work packages convened for interactive workshops to advance their respective work.