Welcome to Module 11: Working with Patients
To ensure a patient-centric development and implementation of repurposed medicines, patients must have a seat at the table, just like all other stakeholders involved. This means patients’ opinions, insights, experiences and expertise must be integrated into the medical or research process. Patient involvement in drug repurposing starts from working with patients as true collaborators and partners from early stages of the research, goes through clinical development and implementation, and continues to market authorisation and post authorisation surveillance. Following this approach provides invaluable insight into the patients’ perspectives, needs, and preferences, which in turn has multiple benefits, such as:
- Guiding the decision-making process
- Enhancing the relevance and effectiveness of treatments
- Addressing real patient needs
- Fostering trust and transparency between researchers, patients, and their families
It is therefore everyone’s responsibility to empower, train and build patients’ capabilities to be able to join project discussions, and to enable them to advocate for their community. Similarly, to ensure a project’s success, other stakeholders like pharmaceutical companies or research institutions must build their capacity to be able to effectively work with patients.
The learning objectives of this module are to:
- Raise awareness on the significance of training patients
- Highlight the importance of developing a comprehensive patient engagement strategy
- Bring to the fore the concept of treating patients as equal partners in any drug repurposing project
Click on the topics in the panel on the right to navigate through the content. Do not forget to click ‘mark as complete’ at the bottom of each page to track your progress.
Good luck on your repurposing journey!
Acknowledgements
Primary authors: Judit Baijet (EURORDIS) and Gabriel Ortega (Beacon for Rare Diseases)
Contributing author: Abby Stock-Duerdoth (previously Beacon for Rare Diseases)
Reviewers: Dalma Hosszú, Rosan Kreeftmeijer-Vegter and Virginie Hivert
We’ve worked hard to bring this module to life, aiming to make it comprehensive and valuable for you. Because this is the very first launch of the Digital Academy, we really need your feedback. Please take a moment to complete our 3-minute feedback form at the end—we’d love to hear your thoughts!
