Good Practices vs. Real Life: What Actually Works?

As part of the EUPATI Academia/NGO Cluster’s webinars on patient involvement in academic research, this second webinar asked what happens when good practice meets everyday reality. Frameworks, charters and good-practice guidance for patient involvement are now well established. Putting them into practice, with limited resources, unpredictable research timelines and open questions of shared ownership, is another matter. EUPATI was joined by three speakers from the academic and non-profit research community: EORTC, University College Dublin (UCD) and the All-Island PPI Ignite Network, and Sant Joan de Déu (SJD) Hospital Barcelona.

Iryna Shakhnenko (EORTC) spoke about the cultural shift towards normalising patient involvement in clinical research. Emma Dorris (UCD and the All-Island PPI Ignite Network) looked at where best practice meets reality, from early involvement to power imbalances. Begoña Nafría Escalera (SJD) shared experience of involving children and young people in clinical trials, including the outcomes and the lessons learned. The session was moderated by Phaedra Locquet (KU Leuven) and closed with an open Q&A with the panel.

Together, the contributions offered candid examples of what has, and has not, worked, and showed why no framework can simply be copied from one organisation to another: it has to be adapted to each organisation’s governance and resources. The webinar is relevant for anyone working at the interface between academia and patient communities who is looking for practical ways to adapt good practices to their own context.