European Liver Patients’ Association (ELPA), shared on LinkedIn:
“From Patient Voice to Meaningful Evidence: Different Perspectives, Better Care.
At UEG Week 2026 in Barcelona, ELPA warmly congratulates United European Gastroenterology, the scientific community, and all patient organisations on the launch of the Patient Representatives Advisory Board (PRAB).
We are proud to join this three-year collaboration, strengthening meaningful patient involvement in research, policy, and care.
Today’s discussions on PROMs raised an important question: Are we capturing the full picture of what treatment success and quality of life really mean?
A patient, caregiver, healthcare professional, and care coordinator may experience the same disease journey differently. Each can reveal important dimensions of independence, dignity, treatment burden, and quality of life.
These perspectives should complement, never replace, the patient’s own voice.
For some, treatment success means longer survival. For others, less suffering, greater independence, or more meaningful time with family.
We are not asking for another layer of complexity. We are asking for a more complete understanding of what treatment success really means. For researchers and industry, understanding these perspectives earlier can help design better clinical trials, identify more meaningful outcomes, and generate stronger evidence of treatment value.
Ultimately, this can support more patient-relevant innovation, better-informed regulatory and HTA decisions, and improved care.
Our goal is not more questionnaires or additional burdens, but better questions, earlier involvement, and more meaningful patient-centred research.
We hope this approach can contribute to the UEG PROMs toolkit and encourage future dialogue with EMA and EUHTA on integrating complementary perspectives into clinical development and assessment.
For people living with liver diseases, including liver cancer and advanced conditions, these perspectives are particularly important.
ELPA stands ready to contribute alongside UEG, PRAB, and the scientific community.
Because meaningful patient involvement should not begin when research ends. It should help shape the questions from the very beginning.”
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