Patient engagement

Patient engagement and patient involvement, is a key priority for ECRIN and is at the heart of its current Strategic Plan. Since the very beginning, ECRIN has worked closely with patient representatives throughout its organisation. ECRIN integrated a patient representative in its scientific board, involved Young Patients Advisory Groups and patients’ representatives in the proposals evaluation committee in the PedCRIN project and contributed to the development of information material for the lay public and translated into different languages (ECRAN project). ECRIN has integrated the patient voice in its annual International Clinical Trial Day event, has patient representatives as members of the Advisory Board and is involved through its partners in various national initiatives. More recently ECRIN has also launched a patient engagement working group and taken on an increasing project portfolio to support greater diversity, equity and inclusivity in clinical research with the development of training on inclusive clinical trial methodology  (SENSITISE project) and by embarking on the mission to address this imbalance by breaking down barriers to participation and creating a more equitable, inclusive clinical research ecosystem (READI project). 

Patient engagement and Clinical Research

Enhancing patient engagement in clinical research is one of the aims of the Strategic Plan 2024-2027. ECRIN seeks to strengthen accessibility to clinical studies and more patient-centric approach in the design, development, and reporting of clinical research. By continuing to place patients at the heart of the process, ECRIN aims to enhance the quality and relevance of clinical studies while promoting equal access for all.

Patient education

Collaboration with EUPATI

A significant step toEUPATI 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.

Within this collaboration, ECRIN also aims to create the liaison with the EUPATI National Partners and the ECRIN national partners. 
ECRIN involvement incorporates: 

• Being a member of the EUPATI patient expert training committee contributing to the design, development and implementation of EUPATI training

• Co-organising training events and webinars with EUPATI

• Disseminating relevant ECRIN/EUPATI patient engagement initiatives
• Being the leaders of the academic cluster and of the EUPATI National Platforms (ENP) cluster within the EUPATI governance structure

ECRIN supported patient training

ECRIN also works to develop training for patients through the projects that it participates in. Through the REMEDi4ALL project ECRIN has created a series of 3 webinars on Clinical Trials to explain:

• Why we do clinical research and what the process looks like for participants
• Explore different ways of conducting clinical trials, particularly for rare diseases
• Discuss different organisations, process and pathways for expert support when planning, setting up and running a clinical trials.  

Researchers and meaningful patient engagement

By informing and training on patient involvement, ECRIN strives for 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

The SENSITISE project focuses on inclusive clinical trials training and education to increase the involvement of under-served groups in clinical research. By building on work already carried out within the consortium to support an understanding of effective clinical trial design and reaching out to two key stakeholder groups, future trialists and current trialists, with dedicated training materials that support the development of inclusive practices SENSITISE aims to encourage change and ensure appropriate representation of under-served groups. 

Through the READI project ECRIN will work with key stakeholders in the clinical research ecosystem to:

• contribute to the identification of barriers and facilitators for inclusivity in clinical studies in Europe.
• develop guidance on how to use key data to identify the study population
• map the already identified design and operational features for inclusivity including gap analysis
• evaluate the existing tools and the develop new approaches
• create a framework for the monitoring and the evaluation of the impact of inclusive clinical study strategies
• create a centralised toolkit to support study teams to integrate inclusive practices into their design and conduct, analysis and reporting.  

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