Patients and consumers

The European Medicines Agency (EMA) and patients have been actively interacting since the creation of the Agency in 1995. This cooperation was extended to include consumer groups with an interest in medicines.

Added on 3 June 2025:
'Medicine overviews survey' section

Patients and consumers bring a 'real-life' experience as well as specific knowledge and expertise to scientific discussions on medicines and on the impact of regulatory decisions. 

Collaborating with these groups supports transparency and improves regulatory processes.

Key milestones of EMA interaction with patients and consumers

 

Key milestones of EMA interaction with patients and consumers: Text version

• 1995: EMA created
• 1996: Dialogue with patients initiated
• 2000: Patients become Committee members
• 2005: Framework of interaction with patients and their organisations
• 2006: Patient and Consumer Working Party
• 2014: EMA's Public Engagement Department created
• 2017: Public hearings, involving young people
• 2020: Patient engagement in crisis management
• Ongoing: Systematic patient input along medicine lifecycle

Also on this topic

• Getting involved in EMA activities as a patient, consumer or career
• Eligible patients and consumers organisations
• Patients' and Consumers' Working Party
• Training and resources for patients and consumers
• Patients and consumers: Key documents

Medicine overviews survey

EMA is inviting patients and consumers to provide their comments on the medicine overviews that we publish on this website.

The overviews summarise in plain language key information related to medicines authorised in the European Union. This includes scope of authorisation, usage, and benefits and risks.

Your comments will help us asses if our medicine overviews meet your needs. 

For instance, we want to know if the overviews are clear, accessible and relevant. This will improve how we communicate about medicines.

Healthcare professionals and members of the public are also invited to comment.

Please provide your comments by 6 July via the survey linked below. This should take you between 5 and 10 minutes:

• Survey on EMA's plain language summaries of medicines (medicine overviews)

For more on how to find information on medicines authorised for human or veterinary use, see Find medicine. 

Framework for engagement

The framework for engagement between EMA and patients and consumers and their organisations outlines the basis for involving patients and consumers in Agency activities.

EMA's Management Board endorsed an updated framework in 2022:

Engagement framework: European Medicines Agency and patients, consumers and their organisations

Adopted

The framework aims at:

• supporting access to patients’ real-life experiences of living with a condition, its management and the current use of medicines complementing the scientific evidence provided during the evaluation process;
• promoting the generation, collection and use of evidence-based patient experience data for benefit-risk decision-making;
• enhancing patients and consumers understanding of medicines regulation and their role in the process;
• contributing to efficient and targeted communication to patients and consumers to support their role in the safe and rational use of medicines and to foster trust in the EU Medicines Regulatory Network.

This framework is in line with EMA's overarching framework for stakeholder relations management, which the EMA Management Board adopted in June 2016:

European Medicines Agency (EMA) stakeholder relations management framework

Reference Number: EMA/48651/2016

Activities of patients and consumers

Patients and consumers are involved in a wide range of activities at the Agency, including:

• as members of the Management Board;
• as members of scientific committees;
• being consulted on disease-specific requests by the scientific committees and working parties;
• taking part in discussions on the development and authorisation of medicines;
• reviewing written information on medicines prepared by the Agency;
• being involved in the preparation of guidelines;
• taking part in the Agency's conferences and workshops.

Stakeholder engagement report

EMA publishes a biennial report on its interactions with patients, consumers, healthcare professionals, academics and their organisations, incorporating both quantitative and qualitative data.

Stakeholder engagement report 2022-2023

For previous reports, see Key documents.

Human Medicines Highlights Newsletter

Human Medicines Highlights is an EMA monthly newsletter aimed at patients, consumers and healthcare professionals.

It contains updates on medicines regulation and news for stakeholders.

Issues from May 2024 (Issue 180) onwards are available at the link below:

• Human Medicines Highlights: Issue 180 onwards

Previous issues 118-179 are available on EMA's website in PDF format: 

• Human Medicines Highlights: Issues 118-179

Use this link to receive Human Medicines Highlights by email:

• Subscribe to Human Medicines Highlights