1. 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. 2. Patient Engagement Multiple Fragmentation
3. 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. ...
4. 4. 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 sectorsand 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
5. 5. About PFMD 8 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
6. 6. Committed to membership growth and enhanced stakeholder representation
7. 7. Understanding the landscape PFMD Mapping and Networking Tool Enter your initiatives and find partners https://involvement-mapping.patientfocusedmedicine.org/ 12 Searchable and interactive repository Detailed reports of initiatives Internal reports
8. 8. Putting it all together Meta-framework co-creation and implementation
9. 9. 14 Understanding the landscape Stakeholder Expectations Matrix
10. 10. (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
11. 11. Patient Types and Levels of Expertise
12. 12. Initiatives Repartition by Focus and Geography
13. 13. Type of Relationship & where in Medicine Lifecycle
14. 14. Initiatives by medical scope
15. 15. Initiatives by medical scope
16. 16. Tailored organisational reports Organization / System Development subdivision Patient engagement initiative Contribution to advocacy goals
17. 17. Get on the map, share PE practices and manage your PE portfolio1
18. 18. Where are you on the PATIENT IMPACT MAP? 2
19. 19. Get on board of PFMD.org! 3