Patient Engagement for Medicines Development in a nutshell

PFMD’s HOW TO modules for patient engagement

As the next step to ensure systematic patient engagement, PFMD is building on existing working groups to deliver “How-to Modules” for patient engagement activities, skills and development phases.

The practical “how-to modules” are built as part of the Patient Engagement Quality Guidance (PEQG), which was co-created between 2017-2018.

For this continuation work that provides more in-depth and practical guides for specific patient engagement activities, the co-creation working groups were created in January 2019.

The work was kick-started with 44 contributors across 31 organisations (including patient organisations, pharma, hospital, CRO) and eight individual patient experts. Four co-creation working groups will focus on patient engagement activities that are specific to the medicines development phases and 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.

Working Group 1
Early development & Preclinical

Working Group 2
Clinical trial phases I-III

Working Group 3
Regulatory phase

Working Group 4
Post-marketing phase

Working Group 5
Plain language summaries

Working Group 6
Training and education

First draft how-to modules delivered in 2020

PFMD Contributors’ Network

44 Participants, representing
32 organisations, in:

*6 Working Groups

11 Industry representatives

9 Patient/ patient organisation representatives

6 Consultancy representatives

6 Patient experts/ advocates

4 Independent experts with various related expertise

3 Academic researchers

2 National and supranational organisations

2 CRO/ Service providers to pharma industry- representatives

1 Research Hospital representative

Are you interested in contributing to this work?

The aim is to deliver the first “how-to” practical modules before the end of 2019.
Expertise is always welcome, so please contact PFMD if you want to collaborate.

I want to participate

Read more about the PFMD Contributors’ Network 2018

PFMD Contributors’ Network

Co-creating a meta-framework for patient engagement takes collective collaboration and commitment. PFMD has organised 6 workshops with 76 international participants representing patients/ patient organisations, industry (including CRO and biotech), independent experts (with backgrounds from academia, research and also industry), HTA and regulatory.

Find out who has been part of the Framework building Working groups and task forces in the sections below. Find more information about them by clicking on their name. This will lead you to the SYNaPsE Experts Network.

76 Participants, representing
51 organisations, in:

  • 3 Working Group meetings,
  • 4 Task force meetings,
  • and numerous alignment calls.

30 Industry representatives

20 Patient/ patient organisation representatives

6 CRO/ Service providers to pharma industry- representatives

5 Independent experts with various related expertise

4 HTA/ Regulatory representatives

4 National and supranational organisations

3 Research Hospital representatives

2 Academic researchers

2 Non-profit organisation representatives

Find all participants here

Representing 51 Organisations