WFIPP and the European Patients Forum (EPF) would like to bring to your attention a worthwhile survey to be completed by national patient organizations.

Thank you to those of you who take the time and effort to complete it. EPF has informed us that it will really appreciate the opinions of WFIPP member organizations.

EPF is pleased to introduce you to a study developed by our member organization Plataforma de Organizaciones de Pacientes (POP; Spanish Platform of Patients’ Organisations). The main objective of it is finding out the current level of participation of patients’ organisations in their respective Health Care Systems in Europe.

As you are a representative of a pan European organization, unfortunately the scope of the survey does not apply to you. However, we would actively encourage you to forward the survey to your members who are national coalition organizations.

This is an exciting opportunity to contribute to research that will improve the understanding of the patient movement at European level and provide you, the EPF members, useful insight for advocacy work. Ultimately, we are hoping that the results lead to further improvement of the patient involvement in national Health Care Systems.

Please click here to access the survey.

In 2018, POP published a study to know in detail the patient associative network in Spain. Thanks to this study, we learn more about the existing patient associations in Spain, how many people they support, what services they offer, what their priorities and difficulties are, among other issues. As part of the study, POP carried out a benchmarking analysis at the European level to find out how other healthcare systems are articulated and how the integration of patients in public policy was considered in those countries to have the first approach.

POP are currently updating this data. As far as the European part of the study is concerned, we would like to collect primary data to find out the extent of patient involvement and participation in policymaking as well as their current integration into their respective National Health Systems. Through this data, we would like to know whether the patient’s voice is heard in other European countries and whether requests and proposals aiming at improving the quality of life of people with health conditions are materialised in public policies. We are, therefore, asking other European patient organisations to support us by completing a short questionnaire to help us understand the situation in their respective countries.

It will take approximately 10 minutes to complete the questionnaire. The results of the study will be openly available for consultation by interested entities.

Should you have any questions, please do not hesitate to contact us.