D6.2 List of the relevant models addressing sustainability for all
stakeholders
777450 - PARADIGM
Patients Active in Research and Dialogues for an Improved Generation of Medicines
WP6 Sustainability Strategy
Lead contributor Elisa Ferrer (2 EURORDIS) elisa.ferrer@eurordis.org Virginie Hivert (2 EURORDIS) Roslyn Schneider (27 PFIZER) Other contributors Kirsty Reid (14 EFPIA)
Magda Chlebus (14 EFPIA) Eva Molero (13 SYNAPSE) Sava Beninski (2 EURORDIS) Karina Huberman (3 EATG) Mathieu Boudes (1 EPF)
Nicholas Brooke (12 The Synergist)
Due date 30/06/2019
Delivery date 11/07/2019 Deliverable type R
Dissemination level CO
Description of Action Version Date
V1.1 07/05/2018
Copyright 2019 PARADIGM Consortium - 777450 – PARADIGM D 6.2 List of the relevant models addressing sustainability for all stakeholders 2
Table of Contents
Document History ... 3
Definitions ... 4
1. Publishable Summary ... 5
2. Introduction and objectives ... 6
3. Methodology ... 7
4. Business model canvas: the four canvases ... 8
4.1. Canvas # 1: Patient-led joint venture ... 9
4.2. Canvas # 2: Multi-tier approach to services ... 11
4.3. Canvas # 3: Operationalise patient engagement ... 12
4.4. Canvas # 4: Creation of a foundation to de-risk medicines R&D ... 13
4.5. Analysis and conclusions ... 14
5. SWOT analysis ... 15
5.1. Canvas #1: Patient-led joint venture ... 15
5.2. Canvas #2: Multi-tier approach to services ... 16
5.3. Canvas #3: Operationalise patient engagement... 16
5.4. Canvas #4: Creation of a foundation to de-risk medicines R&D ... 17
6. Prioritisation of elements to be considered for long-term sustainability ... 19
6.1. Topic group 1: Existing patient engagement expertise, alliance of key partners, building a network of experts ... 20
6.2. Topic 2: Promote knowledge on PE processes through training/education ... 21
6.3. Topic 3: Measuring the impact of patient engagement ... 21
6.4. Topic 4: De-risking R&D processes (reducing uncertainty on data generation) ... 21
6.5. Topic 5: Funding and viability of patient engagement strategy ... 22
7. List of sustainability scenarios ... 23
7.1. Scenario 1: Top down signal ... 24
7.2. Scenario 2: Reinforced by practice ... 25
8. Overall conclusions and next steps ... 26
9. Annexes ... 27
Annex 1: Previous key learnings ... 27
Annex 2: Detailed methodology ... 30
Annex 3: Patient engagement market approach ... 36
Acknowledgements ... 37
Copyright 2019 PARADIGM Consortium - 777450 – PARADIGM D 6.2 List of the relevant models addressing sustainability for all stakeholders 5
1. Publishable Summary
The objective of WP6 task 6.3, is to propose a model(s) addressing the sustainability of the outcomes and concepts developed in PARADIGM taking into account the needs and expectations of all relevant stakeholders and considering the end goal of integrating patient engagement in R&D best practices.
Therefore, our aim is to address the sustainability of patient engagement in the healthcare ecosystem understood as a consistent and systematic approach taking into consideration all the relationships existing among the relevant stakeholders and the interrelated processes.
In this context patient engagement has to be looked at as a critical element of the medicines life cycle, sustained by a strategic and operational and financial framework involving all relevant stakeholder groups and ensuring transparency through clear governance, methods and management of competing interests.
Based on previous desk research, interviews and workshops exploring relevant models addressing sustainability WP6 has developed a few scenarios for consultation. Each scenario proposes a way forward to make patient engagement sustainable in the future. They recognise that the field of patient engagement is a rapidly evolving field with a broad offering of existing initiatives and service providers. These scenarios are originated in the EU region and might reflect EU preferences but are not limited to the EU region and should be applicable to other parts of the world.
The proposed scenarios will be further refined and each of their composing elements will be described in greater detail and will be presented for consultation to the PARADIGM consortium and the PILG. Results of the consultation will be analysed and decisions on trade-offs will be made together with WP6 partners. The resulting scenario will be submitted as part of deliverable D6.3.
