PARADIGM
- 1. 1 Patients Active in Research and Dialogues for an Improved Generation of Medicines Mathieu Boudes, PhD PARADIGM Coordinator European Patients’ Forum
- 3. 3 our vision – three pillars patient education and training guidance on engagement sustainability in terms of concept, resources and processes. structured, meaningful, sustainable and ethical patient engagement
- 4. 4 our objectives • Needs and expectations Strengthen the understanding of stakeholders’ needs and expectations for engagement (including underrepresented and vulnerable populations); • Sustainability roadmap Develop an inventive and workable sustainability roadmap to optimise patient engagement in key decision-making points across medicines’ R&D • Maximum synergies Ensure maximum synergies with other initiatives focusing on the patient’s voice in the life cycle of medicines, (PFMD or EUPATI) • Agreed metrics Develop agreed patient engagement metrics to increase evidence demonstrating the impact of patient engagement practices • Systems-readiness Strengthen systems-readiness towards patient engagement across the diverse range of stakeholders that develop, regulate and assess medicines; to provide a framework that allows structured, meaningful, sustainable and ethical patient engagement
- 5. 5 our work
- 6. 6 • Promoting the adoption of practices by stakeholder groups by creating a ‘lowest common denominator’ of expectations for effective engagement • Engagement capability, capacity building and sustainability by identifying specific resource needs and mobilisation potential for each stakeholder to further advance implementation of meaningful patient engagement practices across disease states and diverse patient groups • Rules of engagement by developing resources to enable engagement (the “how to engage”) focusing on the three selected phases of the medicines life cycle and taking into account the particular needs of the selected vulnerable populations • Ensuring strategic and extensive outreach to a broad set of stakeholders our work (#2)
- 7. 7 our timeline 1st Open Forum Expectations, needs and aspirations 2nd Open Forum Metrics Sustainability roadmap PE Toolbox 3rd Open Forum PARADIGM 30 months April 2018 January 2019 September 2019 June 2020 July 2020 July 2020July 2020
- 9. 9 our funders In cash contribution in-kind contribution
- 10. 10 Go to sli.do and enter the code: #A874