By using the PE Quality Guidance that was co-created with patients and other stakeholders in the patient engagement (PE) and medicines landscape, our objective is to complement the existing guidance with concrete how-to guides that helps anyone wanting to start their PE journey. This is part of PFMD's larger objective to co-create a "PE meta-framework" that can be used by anyone who wants to start their PE journey or is looking for guidance on specific activities on how to involve patients.
For Working Group 1 (WG), the focus is in the early development and pre-clinical phases.
PROCESS & METHODOLOGY
PFMD called for interested individuals to join the co-creation WGs via snowball technique by communicating about the WGs in the PFMD membership and network in the summer and autumn of 2018. The open webinar for more information was held in December 2018 and final groups were formed in January 2019, with kick-off calls organised in February 2019.
The co-creation WGs will use the PFMD step-by-step approach together with the PE Quality Guidance in its work as well as integrate the usage of the 7 Quality Criteria in the final outcome. The process of co-creation will be the case in point for how to operationalise the guidance.
A number of items were identified from the list of 150+ activities- initiatives (see link below). Afterwards, a final shortlist of activities was made based on "desk research" scoping what resources exist already. Based on this list, the group is currently drafting the how-to module. This module focuses on involving patients as partners from insight generation to evaluating research methodologies in the early discovery and preclinical phases and hence increasing the impactfulness of PE in the early stages.
Link to the 150+ PE activities- initiative: https://tool.patientfocusedmedicine.org/initiatives/150-pe-activities-to-inform-pe-quality-guidances-how-to-modules)
Quality of patient engagement
What will be your stated “shared purpose”?
This will be determined in April
How will you confirm with all stakeholders that your purpose is understood, that
contributions have influenced the original plans and that disagreements have been
The shared purpose will be discussed and agreed on together as a group.
Do you plan to review the shared purpose and its understanding among stakeholders?
If there is a need, then it will be reviewed.
At which time points?
As needed by the group.