The European Medicines Agency has been engaging in dialogue with European patients and consumers since it was founded in 1995. As users of the medicines that the Agency evaluates, patients and consumers are key stakeholders in the Agency's work and have specific knowledge and expertise to offer. The Agency is committed to maintaining a strong working relationship with these groups.
Activities of patients and consumers
Patients and consumers are involved in a range of activities at the Agency, including:
- being members of its scientific committees and Management Board;
- taking part in scientific advisory groups;
- responding to specific requests from the Agency’s scientific committees and working parties;
- reviewing information on medicines prepared by the Agency;
- being involved in the preparation of guidelines;
- regularly taking part in Agency conferences and workshops.
The framework of interaction defines how the Agency interacts with patients and consumers. This document was endorsed by the Management Board in 2005:
The level of interaction between the Agency and patients' and consumers' organisations can be seen in the annual reports.
Organisations working with the Agency
The Agency engages with patients and consumers via a network of over 30 European patients’ and consumers’ organisations. This ensures that the Agency has direct contact with a wide range of patients and consumers representing the needs and concerns of patients and consumers across Europe.
All of these organisations are not-for-profit with a European Union (EU)-wide mandate. Some of them are umbrella organisations encompassing a number of smaller or national organisations, while others have a particular focus on a specific area such as rare diseases, HIV/AIDS or cancer:
For more information on getting involved in the Agency's work, see getting involved.
Patients' and Consumers' Working Party
Patients and consumers also interact with the Agency through the Patients' and Consumers' Working Party (PCWP). This working party consists of a core group of representatives from patients' and consumers' organisations that provide recommendations to the Agency and its human scientific committees on all matters of interest to patients in relation to medicinal products.
This group, which was established in 2006, has enabled the Agency to build upon its existing interaction with patients and consumers, creating a permanent forum for dialogue on the issues that affect them the most.