Patients as Partners London Feb 2017 presentation by Jan Geissler and myself. The rational behind PFMD.org and our journey building a systematic approach to patient involvement.

1. A Systematic Approach to Patient Engagement
WITH Patients

4. Early involvement may create highest impact,
but involvement today is mostly at late phase

5. Multiple fragmentation

10. Delivering on PMFD.org’s mission

18. About PFMD
18
Goal is to advance a consistent
approach to meaningful patient engagement,
through co-creation and implementation of an efficient,
measurable and reliable meta-framework that integrates the
voice of the patient across the medicines lifecycle.
Established in October 2015
as an open, independent global coalition of stakeholders
managed by a not-for-profit organization.
•“Co-creation” is about encouraging fair and open participation and quality input based on experience and personal insights of
all stakeholders (researchers, clinical developers, regulators, healthcare professionals and patients) to ensure we deliver
significant and desired outcomes where the voice of each stakeholder is equally embedded in final outputs”

20. Putting it all together
Meta-framework co-creation and implementation

22. Understanding the landscape
PFMD Mapping and Networking Tool
Enter your initiatives and find partners
https://involvement-mapping.patientfocusedmedicine.org/
22
Searchable and interactive
repository
Detailed reports of initiatives Internal reports

23. 23
Understanding the landscape
Stakeholder Expectations Matrix

24. (Pre) Discovery
Phase
Early development
Explore literature
Existing PE Initiatives
Frameworks
Clinical
Development Phase
I – III
Explore literature
Existing PE Initiatives
Frameworks
(Post) Marketing
Phase
Launch / lifecycle
Explore literature
Existing PE Initiatives
Frameworks
Integrate and streamline
Defining key criteria for patient engagement
3 Task Forces to Co-Create a PE Meta-Framework
Defining key criteria for PE
ACTION PLAN

25. Actors of the PE framework co-creation - 1st group

26. Actors of the PE framework co-creation - 2nd group

27. Actors of the PE framework co-creation - 3rd group

29. Patient Expertise

30. Initiatives Repartition by Focus and Geography

31. Partnership by Medicine lifecycle

32. Initiatives by medical scope

33. Initiatives by medical scope

37. Tailored organisational reports
Organization /
System Development subdivision
Patient engagement
initiative
Contribution to advocacy goals

38. Get on the map, share PE
practices and manage
your PE portfolio1

39. Engage with
co-creation
focused groups2

40. Get on board of
PFMD.org!
3

41. Where are you on the PATIENT IMPACT MAP?