Past Projects: PatientPartner

To promote the role of patient organisations in clinical trials

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PatientPartner is a project which sets out to promote the role of patient organisations in the clinical trials context.

PatientPartner is based on the belief that involving patient organisations as equal partners at all stages of clinical trials contributes to research that is better adjusted to the real needs of patients.

PatientPartner is a three year project within the 7th Framework program funded by the European Commission. The project is managed by the Dutch Genetic Alliance (VSOP), the European Forum for Good Clinical Practice (EFGCP), the European Genetic Alliances' Network (EGAN) and Genetic Alliance UK.

The project's main goals are:

  • To make inventories of: the needs of patient organisations regarding their involvement in clinical trials as well as the needs and expectations of other involved stakeholders.
    • To identify and realise common points of action amongst all stakeholders through engaging in an active dialogue;
    • To realise a European Network of Patients Partnering in Clinical Research (ENPCR) to support the projects' goals with their advice and to create a European network for interaction with the other stakeholders in the clinical trial field;
    • To create European, patient-centered guiding tools and recommendations on how to create a successful partnership in the clinical trials context.

Three Regional Workshops have been organised which will take place around Europe. These three workshops are meant for dialogue on regional-specific hurdles towards more partnerships in clinical trials, for instance in relation to access information on patients' rights, cultural and political aspects, the relationship between various stakeholders etc.

Genetic Alliance UK is leading on the dissemination work package for the PatientPartner Project.