Description
Patient Focused Medicines Development (PFMD), today a global coalition of 32 members, began its Framework Building workstream in 2016 in order to respond to a need for a practical and actionable framework to define how stakeholders can start their patient engagement (PE) journey and continue to do more effective and meaningful PE. Starting with a landscape analysis of existing PE frameworks, one of the first outputs— the Patient Engagement Quality Guidance (PEQG)—was a co-creation effort of multiple Working Groups that involved more than 100 experts globally (representing more than 51
organisations). The PEQG went through four feedback and validation rounds, from internal reviews to a public consultation, before its release in May 2018.
Another identified need was the need for consensus among stakeholders of what “good PE” looks like, as well as an opportunity to satisfy a high demand to see practical examples demonstrating the quality and outcomes of PE. In response, PFMD created the Book of Good Practices (BOGP) to accompany the practical guidance provided by the PEQG. It is a set of real-life PE cases from different stakeholders illustrating how they have achieved the PE Quality Criteria presented in the PEQG (Figure 1).
This article explains the methodology used to select and assess initiatives to become a part of the BOGP, and it provides examples of the chosen initiatives that help illustrate what a “good practice” in PE could look like.
The first edition of the BOGP was released together with the PE Quality Guidance in May 2018 with eight case studies from industry, research, and patient organisations. The second edition of the BOGP, released at the end of October (2019), enriches and complements the initial set of examples and represents the evolving PE ecosystem.
