The Netherlands has a long tradition of professional patient representation and a well-organized network of patient organizations. 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. For patients, these organizations can be an excellent point of contact to ask questions, understand the research process and explore opportunities to contribute to the development of new therapies.
Useful links:
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EUPATI Patient Engagement Roadmap: a process model for patient involvement in medicines Research and Development (EU)
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Patient Engagement Resource Centre: for (translational) researchers, to navigate platform to help you get started with patient engagement in research (EU)
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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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INVOLV is an expertise centre in the Netherlands, they provide organisational advice and training in patient involvement. They do this for and with patient and client organisations, healthcare providers, researchers and other parties in health care and welfare .
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INVOLV podcast (in Dutch). For example, episode 4 is about the collaboration between a patient representative for a rare condition (SCA1) and a lab researcher.
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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.
Patient organizations (NL)
- Patientenfederatie Nederland: The Netherlands Patients Federation represents more than 200 patient organisations.
- NL Rare Disease patient organisations : Organisaties | Zicht op Zeldzaam
- VSOP is the national patient alliance for rare and genetic diseases in The Netherlands.
- VKS: the patient organisation for everyone affected by a metabolic disease in The Netherlands