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PFMD.org, an open systematic approach to patient engagement

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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.

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PFMD.org, an open systematic approach to patient engagement

  1. 1. A Systematic Approach to Patient Engagement WITH Patients
  2. 2. Early involvement may create highest impact, but involvement today is mostly at late phase
  3. 3. Multiple fragmentation
  4. 4. Delivering on PMFD.org’s mission
  5. 5. 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”
  6. 6. Putting it all together Meta-framework co-creation and implementation
  7. 7. 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
  8. 8. 23 Understanding the landscape Stakeholder Expectations Matrix
  9. 9. (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
  10. 10. Actors of the PE framework co-creation - 1st group
  11. 11. Actors of the PE framework co-creation - 2nd group
  12. 12. Actors of the PE framework co-creation - 3rd group
  13. 13. Patient Expertise
  14. 14. Initiatives Repartition by Focus and Geography
  15. 15. Partnership by Medicine lifecycle
  16. 16. Initiatives by medical scope
  17. 17. Initiatives by medical scope
  18. 18. Tailored organisational reports Organization / System Development subdivision Patient engagement initiative Contribution to advocacy goals
  19. 19. Get on the map, share PE practices and manage your PE portfolio1
  20. 20. Engage with co-creation focused groups2
  21. 21. Get on board of PFMD.org! 3
  22. 22. Where are you on the PATIENT IMPACT MAP?

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