Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017

1. Zaragoza, 27-28 April 2017
A Systematic Approach to Patient Engagement WITH Patients
Nicholas Brooke
Founder The Synergist & PFMD Executive Director
PUBLIC HEALTH CONFERENCE
10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies:
Insights for collaborative networking
Towards Patient and public engagement in HTA

2. Patient Engagement Multiple Fragmentation

3. ...Progress toward a universal framework for patient involvement
requires a joint, pre-competitive, and international approach by all
stakeholders, working in true partnership to consolidate outputs from
existing initiatives, identify gaps, and develop a comprehensive
framework.
It is essential that all stakeholders participate to drive adoption and
implementation of the framework and to ensure that patients and
their needs are embedded at the heart of medicines development
and lifecycle management. ...

6. Collective impact is based on the idea that social problems arise from and
persist because of a complex combination of actions and omissions by players in all
sectors—and therefore can be solved only by the coordinated efforts of those
players, from businesses to government agencies, charitable organizations, and
members of affected populations.
Collective Impact
Harvard Business Review: The Ecosystem of Shared Value

8. About PFMD
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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”

10. Committed to membership growth and
enhanced stakeholder representation

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

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

14. 14
Understanding the landscape
Stakeholder Expectations Matrix

15. (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

17. Patient Types and Levels of Expertise

18. Initiatives Repartition by Focus and Geography

19. Type of Relationship & where in Medicine Lifecycle

20. Initiatives by medical scope

21. Initiatives by medical scope

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

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

27. Where are you on the
PATIENT IMPACT MAP?
2

28. Get on board of
PFMD.org!
3