Patient engagement

Balanced partnerships with patients for efficient and successful clinical research

Patient engagement and patient involvement, is a key priority for ECRIN. Since the very beginning, ECRIN worked closely with patient representatives throughout its organisation. ECRIN already integrated the patient’s voice in the yearly International Clinical Trial Day, added patient representatives as members of the ECRIN advisory board, involved Young Patients Advisory Groups in the PedCRIN project, participated to the ECRAN project, and is involved in various national initiatives.

Patient engagement and Clinical Research

Patient Engagement in Clinical Research is one of the goals in the Strategic Plan 2021-2023, and aims to strengthen and develop balanced partnerships with users and patients that lead to more efficient and successful clinical research.

A significant step to achieve this goal is to collaborate and exchange with patients’ communities. To promote patient involvement and patient engagement in clinical research, ECRIN has started a strategic collaboration with EUPATI, the European Patients’ Academy on Therapeutic Innovation. Together, ECRIN and EUPATI wish to elaborate on their commitment to provide and improve education and training opportunities in clinical research for patients and patient representatives. Also, they aim to strengthen academic researchers’ capacities to effectively engage with patients in their studies.

Patient education

ECRIN is a Sustaining Partner of EUPATI, and contributes to informing patients and to prepare them to participate in the clinical research process. Within this collaboration, ECRIN aims to create the liaison with the EUPATI National Partners and the ECRIN national partners.

The ECRIN involvement on Patient Education incorporates:

Content development for the EUPATI Patient Expert Training Programme
Content development EUPATI Toolbox
Participation in the EUPATI Editorial Board
Participating in the continued education for EUPATI Fellows
Co-organising training events and webinars with EUPATI
Disseminating relevant ECRIN/EUPATI patient engagement initiatives

Researchers and meaningful patient engagement

By informing and training on patient involvement, ECRIN strives after meaningful patient engagement and creating responsible research principles:

Raise awareness for patient engagement
Stimulate clinical research to include responsible research principles
Involve patients and patient representatives in clinical research
Co-organising training events and webinar

Discover the EUPATI trainings and tools addressed to professionals in academia and pharmaceutical industry to help integrating Patient Engagement in life science research.

EUPATI Fundamentals

EUPATI Fundamentals is a training on Patient Engagement addressed to professionals in academia and pharmaceutical industry. This training guides through the processes of engaging patients in medicines development, providing a strong foundation for partnerships with patients and patient organisations.

EUPATI Essentials

The EUPATI Essentials comprises modules for professionals who already have experience with patient engagement. The content builds on the EUPATI Fundamentals training and looks at specific topics in more depth.

EUPATI Connect

The online platform of EUPATI Connect, brings together EUPATI Patient Experts and researchers. The tools aims to help connecting researchers to patients, and to have them involved in the patients engagement initiative of their research.

EUPATI Toolbox

The EUPATI Toolbox is the online tool to help to explore medicines research and development as well as patient engagement. The tool is build upon two main areas: Medicines R&D and Patient Engagement. You can also search by category or keyword, and to refine the search using "tags".

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