Can I Trust the EUPATI Material?

EUPATI stands for well-structured, comprehensive, scientifically reliable, and user-friendly educational materials for patients and patient representatives on a variety of topics. To achieve this, EUPATI employs a comprehensive content production process that involves a wide range of stakeholders. Combining this collective knowledge and expertise, EUPATI has been able to produce a high-quality product that encompasses more than 4.000 content items.

Content Production Process

  1. Collaborative Approach: EUPATI’s content development process is always based on a multi-stakeholder initiative. It brings together a wide range of perspectives around medicines and health technologies R&D, including representatives from patient organisations, academia, industry, the digital sector, regulatory affairs, health technology assessment (HTA) bodies, health care provision, and other relevant areas. This co-designed and patient-focused approach ensures that the information provided is comprehensive and well-structured.
  1. Research and Expertise: EUPATI relies on the expertise and insights of its sustaining partners, network members, and external advisors. Before embarking on content production, EUPATI conducts qualitative and quantitative research, as well as systematic literature reviews, ensuring that the information is rooted in the latest research and scientific literature.
  1. Integrity Oversight: In addition to its research, EUPATI maintains ethical standards by establishing an independent international ethics committee and a regulatory advisory board. These bodies play a pivotal role in safeguarding the ethical and regulatory integrity of the content.
  1. Diverse Authorship and Review: EUPATI’s content is authored by experts from various backgrounds, ensuring a broad spectrum of knowledge and expertise. What makes the process even more robust is that the content is reviewed by experts from different stakeholder groups. For example, content written by a clinical researcher in the industry is cross-checked by academic or patient experts. To check for quality, reliability, neutrality, readability, transparency, inclusivity, and accountability, the content is also reviewed by our independent review boards, experts, and committees.
  1. Internal Review: The EUPATI Editorial Board consists of 4 members representing a diverse spectrum of stakeholders, including patient organisations, academia, industry, and NGOs. They collectively review all new or updated content for EUPATI Toolbox and Patient Expert Course (including all related e-learning and face-to-face course content) maintaining consistency, preventing duplication, and ensuring suitability for the intended audience. The Editorial Board also ensures that the content remains up-to-date in light of regulatory changes, signing off on all EUPATI content before it is released to the public.
  1. External Validation: To ensure that the content is understandable and accessible to the health-interested public, EUPATI tests significant proportions of its material with patient advocates, including testing screen reader accessibility of the website with organisations like Fighting Blindness Ireland. Furthermore, the content is edited for appropriate language by health literacy experts. Feedback received from all reviewers and testers is diligently incorporated during EUPATI’s editorial cycles. This comprehensive approach guarantees the reliability, accuracy, and readability of EUPATI’s content.
  1. License and Accessibility: All EUPATI content is released under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International (CC BY-NC-SA 4.0) license, except for fee-for-service training materials. This license promotes sharing and distribution while retaining the highest standards of reliability.

Guiding principles for Content Development

  • Quality – Meeting the highest EUPATI standards and the guiding principles.  
  • ReliabilityProviding independent, evidence-based, factually accurate content 
  • Neutrality – Providing impartial information and avoiding bias 
  • Readability Providing information in a clear and simple format and language.  
  • Transparency Public disclosure of affiliations and institutional relationships and collaborations. 
  • Inclusivity Striving foraccessible, user-friendly, and comprehensive content for all. 
  • AccountabilityAll contributors are accountable for their work 

 Conclusion

EUPATI’s commitment to quality, transparency, and reliability in its content production process is evident in its comprehensive approach, rigorous oversight, and dedication to making information accessible to the public. These principles serve as the foundation for content creation, ensuring that it aligns with the latest research, scientific literature, and the collective expertise of all stakeholders involved in the process. EUPATI remains resolute in its mission to provide information that is reliable and accessible, catering to the diverse needs of its audience.

Please see more detail in the downloadable content creation process description and guidelines for authors below.

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