EUPATI Supports IHI-Greg Consortium Training

EUPATI Supports IHI-Greg Consortium Training on Meaningful Patient Involvement.

EUPATI in collaboration with Novo Nordisk, has successfully delivered an online training session on patient involvement for members of the IHI-GREG consortium on 27 April. 

The session brought together 55 participants from across Europe, including researchers, industry representatives, and patient contributors, to explore how patient involvement can be meaningfully applied within the IHI-GREG project. 

Advancing patient involvement in Real-World Evidence 

The training focused on strengthening participants’ understanding of patient involvement (PI) in the context of Real-World Data (RWD) and Real-World Evidence (RWE), an area that continues to evolve within healthcare research. 

As highlighted during the session, patient involvement in RWE studies is a growing and innovative field, with traditional approaches still being developed and refined. Through this training, the IHI-GREG consortium is taking important steps to explore how patients can actively contribute to shaping research processes and outcomes. 

From theory to practice 

The session was delivered by trainers Inês Alves and Tamás Bereczky. It included a dedicated contribution from Arun Micheelsen, who presented the role of Real-World Data and evidence within the IHI-GREG project. 

The training combined practical guidance, interactive exercises, and real-world examples to support participants in applying patient involvement in their work. 

Key topics included: 

• Standards and best practices for meaningful patient involvement.

• The role of Real-World Data and Real-World Evidence within the IHI-GREG project.

• A hands-on study scenario exploring how patients can contribute to research design and decision-making. 

A central message throughout the training was the importance of involving patients early in the research process, particularly in shaping research questions and identifying outcomes that truly matter to patients, such as quality of life, treatment burden, and emotional well-being. 

Learning from patient experience 

A highlight of the session was the panel discussion led by members of the IHI-GREG Patient Advisory Group (PAG). Patient representatives Špela Novak, Paola Escamilla, Estelle Jobson, and Petra Adámková shared valuable insights based on their lived experience, discussing both successful approaches and common challenges in patient involvement. 

The discussion emphasised that meaningful patient involvement requires: 

• Clear expectations and roles.

• Inclusive and accessible environments.

• Recognition of patient expertise.

• A commitment to moving beyond “tick-box” approaches. 

By bringing diverse perspectives from across Europe, the PAG play a key role in ensuring that patient voices are integrated into the IHI-GREG project in a meaningful and impactful way. 

Building momentum for the next phase 

The session was led by group leaders Mona Vestergaard, Finn McCartney, and Maria Dutarte, who highlighted the importance of continued collaboration across stakeholders. 

This training marks an important step toward supporting the IHI-GREG consortium in implementing effective and sustainable patient involvement practices across its work. 

Participants will have the opportunity to build on these learnings during the upcoming IHI-GREG General Assembly taking place in Copenhagen on 6 – 7 May, where further discussions and practical applications of patient involvement will take place. 

EUPATI remains committed to empowering patients and stakeholders with the knowledge, skills, and tools needed to foster collaborative, inclusive, and impactful healthcare research. 

More information on the IHI-GREG project can be found here.