Patient involvement in the development of therapies is important to ensure that therapies meet real-world needs. As a researcher, finding your way towards meaningful patient involvement for your project can be challenging. However, many patient organizations specialize in connecting researchers with the appropriate patient partners. These organizations often provide valuable guidance and can help researchers to find a patient (representative) whose experiences align with the goals of the study.
- EUPATI Patient Engagement Roadmap : a process model for patient involvement in medicines Research and Development (EU)
- Patient Engagement Resource Centre : for (translational) researchers, to navigate platform to help you get started with patient engagement in research (EU)
- The Involvement Matrix : helpful tool for structuring patient engagement. It facilitates dialogue between patients and academic researchers to establish clear agreements on the roles, expectations, and nature of involvement.
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- KICKSTARTER (in Dutch) for researchers. The Kickstarter can help you get started by providing guidance on how to effectively engage patients in your research from the start
How to find patients to involve in your study:
- EUPATIconnect: Bringing EUPATI Patient Experts and researchers together (EU)
- ikzoekeenpatient.nl: Find the right patient for better care (in Dutch). This is an initiative of the Patiëntenfederatie Nederland.