Patient Engagement Resource Centre

The Patient Engagement Resource Centre (PERC) is a European repository of publicly available guidance, training, and practical tools designed to make patient engagement a routine part of academic and clinical research. It has been developed by EATRIS, European Patient Forum (EPF), and European Aids Treatment Group (EATG) to address common barriers faced by investigators who wish to involve patients but are unsure how to start, which standards to follow, or which resources are trustworthy.

Key features and contents include:

• Fundamentals section on concepts, definitions, and principles of good patient engagement practice, roadmaps and trainings.
• Guidance on planning patient engagement strategies early in the project, including identifying patient communities, clarifying roles, aligning expectations, remuneration policy.
• Practical tools and templates for engagement activities (e.g. meeting agendas, planning worksheets, feedback forms, budgeting for public and patient involvement) that can be adapted for investigator initiated clinical studies.
• Resources on monitoring, documenting, and evaluating engagement activities to demonstrate impact.
• Case stories and examples from researchers, patients, and caregivers that illustrate real-world collaborations and lessons learned in different disease areas.
• Links to training offers and networks (such as EUPATI and EPF member organisations) that help build competencies for both researchers and patient partners.
• An action catalogue that can help researchers to find the method best suited for their specific project needs.

Investigators organising investigator initiated clinical studies can use PERC to:

• Identify recognised European frameworks and good practice recommendations to underpin patient involvement plans.
• Source examples and templates that support funding proposals, ethics applications, and study-level engagement plans.
• Find training material for research teams and patient partners new to patient and public engagement.
• Discover topic-specific tools (for example, patient engagement in early phase research or protocol development, patient partnerships in rare diseases) that complement disease or method-specific resources.

The platform was established within the Horizon 2020 framework, reflecting European policy and regulatory emphasis on responsible research and innovation and meaningful involvement of patients in health research. While it is not a legal text and does not itself codify regulation, it points users to materials aligned with European medicines research and development practices and expectations from stakeholders such as research infrastructures, patient organisations, and EU funded initiatives.