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Report

Teaser, summary, work performed and final results

Periodic Reporting for period 1 - EFOEUPATI (Ensuring the future of EUPATI beyond 2020)

Teaser

Summary

Ensuring the Future Of EUPATIâ€™s main objective is to ensure optimal exploitation and sustainability of the core achievements of the IMI-EUPATI Project 2012-2017:
1. The Patient Expert Training Course,
2. The multilingual public Toolbox,
3. The ENP Network.

It is imperative that these exist in the medium- and long-term to address the growing field of patient engagement in medicines research and development.

The European Patientsâ€™ Academy on Therapeutic Innovation (EUPATI) was initiated to trigger a major rethink in the way patients and the public understand the medicines development process and their own involvement therein. Armed with a deeper understanding, patient experts and advocates are empowered to work effectively with regulators and other relevant authorities, healthcare professionals, academic researchers and industry to influence the medicines development process for the benefit of patients. IMI-EFOEUPATI project is crucial to ensure the impact EUPATI has addressed and solved in the past years remains sustainable.

The overall objectives of the project are:
- Develop a viable sustainability/business model for the medium- to long-term future of EUPATI.
- Create a Patient Education and Engagement Portal that will host relevant information and resources for patients and other stakeholders to ensure meaningful and value adding patient engagement in medicines R&D. EFOEUPATI WP3 has identified the technical requirements for the Portalâ€™s development. An agency has been selected and is currently developing initial designs and navigation for the portal.
- Strengthen the coordination and impact of the existing EUPATI National Platform (ENP) network, through promotion of collaboration, knowledge exchange and sharing. EFOEUPATI WP4 has worked to build a strong regionalisation of the ENPs. During the first year, real actions have been taken in communications and infrastructure to the National Platforms, with work being organised and driven by the 3 established regions. These will result in a communications and messaging package for ENPs, and multistakeholder events to promote the public-private partnership model that has been key to EUPATIâ€™s success on a European level and must be leveraged at a national level.

Work performed

Over the first year, EFOEUPATI has delivered important outcomes to achieve its 3 key objectives.

WP1 focused in coordinating the different WPs and in delivering the governance of the project. During the first year, it had managed to involve all of the partners of the Consortium and adapt the project plan as necessary to deal with the evolving situation to ensure the delivery of EFOEUPATI stays on track.

WP2 has developed a viable sustainability and business model for the mid- to long-term future of EUPATI by identifying new funding sources and creating the necessary plans to implement and exploit them. The five pillar business model that was submitted comprises different interconnected funding streams which should serve to sustain the core EUPATI activities (the Patient Expert Training Course, the multilingual toolbox, and eventually the national platforms) and enable widening EUPATIâ€™s scope to reach and support more patients and stakeholders engaging patients to improve medicines development in Europe. Pilots of to validate these pillars were planned and will be conducted outside of the framework of the EFOEUPATI project, but will provide valuable feedback to the business model identified so that it can be refined in period 2. The next step will see the founding of the legal entity necessary to put the 5 pillar model into action, and the creation of a business plan to finish transforming the results of the IMI-EUPATI project into a service for the patient community and beyond that will exist for many years.

WP3 has built a plan to develop the future Patient Education and Engagement Portal. In the initial months of the project, the WP3 team defined the technical requirements and scope of the future Portal. These were consolidated into a call for tender to select an agency to develop the Portal. The process started in Dec 2018 and the vendor was selected in Mar 2019. The first months of the development have focused on the wireframing and design of the Portal, that will seamlessly serve both the users of the existing EUPATI Toolbox, but also provide the flexibility to keep pace with EUPATIâ€™s evolution as it strives towards sustainability of growth to support more patient engagement in Europe and around the world. .

WP4 has focused on the regionalisation of the current National Platforms to provide a support infrastructure, optimising the efforts of initiatives whilst connecting cultural and system similarities. Over the past year, WP4 has established worksplans to ensure that the ENP develop training initiatives through mutual support and efficiency gains. They have launched surveys and meetings to work on a common ENP message that could be adapted to each of the countries, and planned events to bring together key stakeholders (industry, patient organisations, academia, non-profits, and regulators) to align and elaborated the public-private partnership model that remains central to EUPATI even beyond the end of the IMI1 project.

Final results

The establishment of EUPATI as a social enterprise is part of the response to the significant societal demand to ensure that more patients are able to access gold standard patient education and actively become engaged in the development and evaluation of medicines, to be able to contribute their unique expertise and experience to improve the process and outcome. EFOEUPATI is striving to ensure this increased number of engagement opportunities not only in the short term but in the medium- and long-term perspective by offering education and training in patient engagement in the decades to come. The regulatory environment at both European and national level will benefit from different levels of collaboration with knowledgeable patients who can interact on regulatory issues, providing a unique patientsâ€™ perspective. The European Medicines Agency has laid some important foundations for patient involvement at every level, but for this to be sustained, it is vital that more patients have appropriate background and knowledge to be able to contribute.

The sustainability of EUPATI will also impact public perception of medicines R&D. The more patients who can articulate its added value publicly, the less suspicious and more curious public will be- moving the needle clearly towards citizensâ€™ involvement in medicines R&D. Patient involvement in R&D, strengthened by EUPATI\'s training and communication activities and informational resources, not only increases efficacy and safety of new treatment development but also enhances public support for medical research.

For the remaining year of EFOEUPATI, the expected results are:establishment of a legal entity necessary to implement the coming business plan to be developed by WP2 to leverage the 5-pillar mixed-business model developed in period 1, the launch of the EUPATI Portal integrating all aspects of patient education and engagement under one roof, and a clear future for the ENP through a more structured and strong infrastructure and regionalisation to drive forward patient engagement on a national level.