From the beginning, PFMD worked to develop a systematic approach that ensures co-creation based on existing knowledge and balanced collaboration with all relevant stakeholders. This allows us to move away from isolated and fragmented practices, bringing all good practices into a unified coherent framework. The next step in making patient engagement happen systematically sees PFMD building on existing working groups to deliver “How-to Modules” for patient engagement activities, skills and development phases.

These practical how-to modules will be part of the Patient Engagement Quality Guidance (PEQG). Their co-creation was kick-started with 39 contributors across 31 organisations (including patient organisations, pharma, hospital, CRO) and eight individual patient experts. Groups were created based on standard medicines development phases: early development and preclinical; Clinical trial phases 1-3; regulatory phase; post-regulatory; and post-marketing. Additionally, two more working groups will take on activities that go across the traditional phases: Plain language summaries (including other communication aspects) and training and education.

The aim is to deliver the first “how-to” practical modules before the end of the year.  Are you interested in contributing to this work? Expertise is always welcome, so please contact PFMD if you want to collaborate.

The co-developed Patient Engagement Quality Guidance (PEQG) has been embraced by the patient engagement community, which has shared it internally and beyond as well as actively utilising it for patient engagement projects. These initiatives span the medicines development continuum, the lifecycle of medicines, and care continuum in both health and social research. Member organisations have adopted it for various purposes, on a project basis, or as a tool to design, assess and manage all their patient engagement activities. Other non-member companies have simply downloaded the document and worked through it step by step.
Currently, the Patient Engagement Quality Guidance Quality Guidance (PEQG) is in the piloting phase with seven projects in Europe and the United States, including organisations with diverse expertise including patient advocacy, medical affairs, pharmaceuticals, research and charity, healthcare services and consultancy. The outcomes of these projects will help us understand and explore the impact Quality Guidance can bring to users. It can also improve its usability and help us incorporate it into Synapse, allowing you to manage all your PE projects in one place.

Find out more about our initiatives:

Patient Engagement Quality Guidance (PEQG)
The Book of Good Practices (BOGP)
Piloting the Patient Engagement Quality Guidance