Periodic Reporting for period 2 - EFOEUPATI (Ensuring the future of EUPATI beyond 2020)
Período documentado: 2019-09-01 hasta 2020-09-30
The Ensuring the Future Of EUPATI (EFOEUPATI) project has achieved its main objective - to ensure the optimal exploitation and sustainability of the core achievements of the IMI-EUPATI Project 2012-2017, namely the EUPATI Patient Expert Training Course, the multilingual public EUPATI Online Toolbox and the EUPATI National Platforms Network. Culminating in the establishment of an independent non-profit foundation, the project developed a viable long-term sustainability/business model for EUPATI. This ensures EUPATI's readiness to address the growing need for patient education and patient engagement in medicines research and development.
The European Patients’ 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. EUPATI is a pioneer model of a successful PPP in providing education and training on medicines R&D and PE within the established processes to all stakeholders.
The EFOEUPATI project played a crucial role in ensuring that the impact of EUPATI was sustained and strengthened. The following objectives were achieved:
- A viable sustainability/business model for the medium- to long-term future of EUPATI was developed
- New EUPATI Patient Education and Engagement Portals were designed and launched
- The coordination of the existing EUPATI National Platform (ENP) Network was strengthened. Regional groupings for ENPs were established. Communication tools and messaging package for ENPs were developed.
The European Patients’ 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. EUPATI is a pioneer model of a successful PPP in providing education and training on medicines R&D and PE within the established processes to all stakeholders.
The EFOEUPATI project played a crucial role in ensuring that the impact of EUPATI was sustained and strengthened. The following objectives were achieved:
- A viable sustainability/business model for the medium- to long-term future of EUPATI was developed
- New EUPATI Patient Education and Engagement Portals were designed and launched
- The coordination of the existing EUPATI National Platform (ENP) Network was strengthened. Regional groupings for ENPs were established. Communication tools and messaging package for ENPs were developed.
EFOEUPATI project deliverables were divided into four main workpackages (WPs): WP1 (Coordination), WP2 (Sustainability), WP3 (Patient Education and Engagement Portal) and WP4 (ENP). All workpackages achieved their objectives, deliverables and milestones according to the set timelines.
WP1 focused on coordinating the different WPs and in delivering the governance of the project. It involved all the partners of the Consortium and adapted the project plan as necessary to ensure the timely delivery of all project work. It also coordinated the submission of interim and final reports as well as all deliverable reports.
WP2 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. This mixed business model comprises different interconnected funding streams which serve to sustain the core EUPATI activities and enable widening EUPATI’s scope to reach and support more patients and stakeholders engaging patients to improve medicines development in Europe. Pilot activities to validate the different pillars of the business model (executed and evaluated outside of the framework of the EFOEUPATI project) provided valuable feedback and helped to refine and finalise the model. Finally, WP2 supported the establishment of EUPATI Foundation as an independent legal entity necessary to put the full business model into action, ensuring long-term sustainability and maintaining the impact of EUPATI.
WP3 developed, designed and launched new EUPATI Patient Education and Engagement Portals. These host relevant information and resources for patients and other stakeholders to ensure meaningful and value adding patient engagement in medicines R&D. EUPATI main portal (www.eupati.eu) provides information and guidance about the training & education, The EUPATI Online Toolbox (www.toolbox.eupati.eu) offers a large library of resources in multiple languages to the general public and the EUPATI Collaborate Portal (www.collaborate.eupati.eu) provides opportunities for collaboration with EUPATI and its network.
WP4 focused on the regionalisation of the EUPATI National Platforms and provide a support infrastructure, optimising the efforts of initiatives whilst connecting cultural and system similarities. It also supported training initiatives through sharing of best practices and guides. A communication toolkit and common ENP messages package was developed and shared widely within the network. These tools are easily adaptable to different country contexts and facilitate the replication of the public-private partnership model and EUPATI activities at the national level.
The EUPATI Secretariat worked closely with the Work Package leaders to ensure successful communication and dissemination of project progress and results. Information about the project outcomes were widely disseminated. The communication channels include among others presentations, conferences, social media such as Twitter (4’700+) and Facebook (2’500+), distribution list (4’000+), webinars, and the EUPATI website (700’000+). Key dissemination elements include a webinar, press release and newsletter features.
WP1 focused on coordinating the different WPs and in delivering the governance of the project. It involved all the partners of the Consortium and adapted the project plan as necessary to ensure the timely delivery of all project work. It also coordinated the submission of interim and final reports as well as all deliverable reports.
WP2 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. This mixed business model comprises different interconnected funding streams which serve to sustain the core EUPATI activities and enable widening EUPATI’s scope to reach and support more patients and stakeholders engaging patients to improve medicines development in Europe. Pilot activities to validate the different pillars of the business model (executed and evaluated outside of the framework of the EFOEUPATI project) provided valuable feedback and helped to refine and finalise the model. Finally, WP2 supported the establishment of EUPATI Foundation as an independent legal entity necessary to put the full business model into action, ensuring long-term sustainability and maintaining the impact of EUPATI.
WP3 developed, designed and launched new EUPATI Patient Education and Engagement Portals. These host relevant information and resources for patients and other stakeholders to ensure meaningful and value adding patient engagement in medicines R&D. EUPATI main portal (www.eupati.eu) provides information and guidance about the training & education, The EUPATI Online Toolbox (www.toolbox.eupati.eu) offers a large library of resources in multiple languages to the general public and the EUPATI Collaborate Portal (www.collaborate.eupati.eu) provides opportunities for collaboration with EUPATI and its network.
WP4 focused on the regionalisation of the EUPATI National Platforms and provide a support infrastructure, optimising the efforts of initiatives whilst connecting cultural and system similarities. It also supported training initiatives through sharing of best practices and guides. A communication toolkit and common ENP messages package was developed and shared widely within the network. These tools are easily adaptable to different country contexts and facilitate the replication of the public-private partnership model and EUPATI activities at the national level.
The EUPATI Secretariat worked closely with the Work Package leaders to ensure successful communication and dissemination of project progress and results. Information about the project outcomes were widely disseminated. The communication channels include among others presentations, conferences, social media such as Twitter (4’700+) and Facebook (2’500+), distribution list (4’000+), webinars, and the EUPATI website (700’000+). Key dissemination elements include a webinar, press release and newsletter features.
The EFOEUPATI project brought about several concrete results and tools that have a major impact, enabling significant progress in the field of patient education and patient engagement in medicines R&D. EUPATI has an impact beyond Europe and is globally recognised as a dependable and neutral knowhow provider through trusted, state of the art, user-friendly educational resources. This ‘knowledge- building’ enables patients to meaningfully engage with researchers, regulators, industry and policymakers and ultimately leads to more impactful innovation and better outcomes for patients. Extending the educational portfolio towards other stakeholder groups than patients will help to foster mutual understanding, trust building and forming mutually beneficial collaborations.
The results of the work highlight an excellent example of what makes a good and well-functioning public-private partnership. All the efforts undertaken by EUPATI are the result of a successful public private partnership. No other model would have provided such results.
The establishment of the EUPATI Foundation as an independent non-profit entity 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 has ensured 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 sustainability of EUPATI has also an impact on the public perception of patient engagement in medicines R&D. Meaningful 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.
The results of the work highlight an excellent example of what makes a good and well-functioning public-private partnership. All the efforts undertaken by EUPATI are the result of a successful public private partnership. No other model would have provided such results.
The establishment of the EUPATI Foundation as an independent non-profit entity 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 has ensured 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 sustainability of EUPATI has also an impact on the public perception of patient engagement in medicines R&D. Meaningful 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.