PFMD was present at the first ever Patients as Partners (PaP) event to be held in Europe (5-6 February, London). Nicholas Brooke, PFMD CEO and Jan Geissler, Director at EUPATI, talked about the fragmented patient engagement landscape, the journey towards a systematic approach to patient involvement and the Global Landscape Mapping and Networking Tool as a first step in co-creating an implementable meta-framework for patient engagement across the life cycle of medicines.
Reaching our common goal of meaningful patient engagement and involvement in medicines development and lifecycle requires all stakeholders to not only have a common purpose and vision but also clear understanding and alignment of expectations.
That’s why we have launched the Stakeholder Expectations Matrix – an ambitious survey-based project to better understand and clarify stakeholder expectations from patient involvement in drug development.
As part of the effort to co-create a meta-framework for patient engagement, PFMD organized 3 workshops with 45 international participants representing patients/ patient organisations, industry (including. CRO and biotech), independent experts (with backgrounds from academia, research and also industry), HTA and regulatory. Each workshop was designed to focus on a specific phase of medicines development and lifecycle and participants were specifically selected based on what they could bring to the table. We now have an open and engaged community of taskforces with specific actions to drive co-creation.
Better patient engagement in medicine development begins with understanding and categorizing the existing landscape.
PFMD has developed and launched an online mapping and networking platform that captures, maps and categorizes patient engagement initiatives from across the globe. The platform facilitates networking and collaboration, and will be used to incorporate best practices into an integrated patient involvement framework.
PFMD published its inaugural paper, entitled Culture and process change as a priority for patient engagement in medicines development, in the peer-reviewed journal, Therapeutic Innovation & Regulatory Science (TIRS).
The complexity of medicines development and urgency to deliver effective patient engagement necessitates a phased working approach to the development of a meta-framework for patient engagement- PFMD’ end goal.
PFMD is taking a rational and methodological approach to co-create a meta-framework with key stakeholders in 4 key steps: