Welcome to the EPF survey on the added-value of patient organisations!
Thank you for taking the time to contribute to this important piece of work.
What is this survey about?
Patient and public health organisations make a unique contribution to the public health debate, voicing the experience and expertise of the healthcare users, their constituents.
However, it is often a problem for patient and public health organisations to present decision-makers with evidence of their added value.
The objective of this survey is to collect evidence of the impact and added-value of patient organisations.
The results of this survey will then be compiled in a report to demonstrate the contribution of patient organisations to the health sphere in Europe, both in terms of EU policy involvement and drive and more broadly in terms of the value at European and national level.
This survey is crucial for the European Patients’ Forum, as its results will be used to advocate for continued and increased support for patient and public health organisations, notably in the framework of the mid-term review of the 2014-2020 multiannual financial framework.
Who should respond to the survey?
Patient organisations that are members of EPF (both national coalitions and European umbrellas) and or the eligible patient/consumer organisations at the European Medicines' Agency.
Structure of the survey
The survey is structured around main themes:
1. Representativeness and legitimacy of patient organisations
2. Advocacy work
3. Patient and health organisation's role in research
4. Capacity-building activities
5. Support to individual patients
6. Perceived impact
How to respond and how long will it take?
The survey is made of 49 questions, most of them are multiple choices questions.
It should take you around 30 minutes to answer the survey.
Questions?
Should you encounter any problem in answering this survey, please contact EPF Membership & Stakeholder Relations' Manager Camille Bullot (camille.bullot@eu-patient.eu).
Thank you again for your time and support!