PFMD published the Patient Engagement Quality Guidance (PEQG) in 2018 that was co-created together with 76 experts representing 51 organisations. The PEQG was tested, reviewed and its usability was validated through multiple workshops and finally in a public consultation in the end of 2017. This guidance built on the existing PE activities, frameworks and recommendations at the time (published by summer 2017). More details can be found in the literature review and framework analysis linked.
Scope and aim:
Originally the aim of the extraction of these activities was two-fold, 1) to learn about how patients are being involved in the different phases of medicines development currently and 2) if and how many PE activities exist in each phase from early R&D to the post-registration phases. Now the 150+ activities will form the basis from which the specific how-to modules for prioritised activities will be co-created as a next step for PEQG.
To continue building on this work stream and co-create specific how-to modules for the PEQG, PFMD has initiated working groups to identify and work on the most relevant PE activities in 2019. The list of PE activities were extracted from the source in the above mentioned literature review and framework analysis and additional sources identified by summer 2017 (a total of 20 sources). A total of over 150 patient engagement activities were recommended or mentioned in these sources (both with individual patients, patient advocates/ experts and/ or patient organisations).
The list of these PE activities were then consolidated and cleaned by the Core team and pushed out to public consultation to validate their relevance as a PE activity, but also in the suggested phase. The results of the public consultation will be shared here (and pending abstract approval).
The co-creation Working Groups are their own initiative - check PFMD organisation initiatives to learn more.
Involving patients in the lifecycle of medicine development