Empowering Patient Voices in Digestive Health
BRUSSELS — The launch of the Digestive Health Roundtable Manifesto 2025 by United European Gastroenterology (UEG) heralds a pivotal moment for digestive health policy in Europe. Together with eight prominent patient associations, UEG advocates for a paradigm shift, urging that patients be recognized as co-creators, shaping the narratives of policy, research, and clinical care rather than simply being passive recipients.
The manifesto was conceived through collaborative dialogues at UEG Week 2025, integrating insights from clinical experts, researchers, policymakers, and patient representatives. This multi-stakeholder approach addresses the formidable challenge of Europe's growing digestive health challenges, underscoring the need for heightened awareness and action. Digestive diseases significantly impact millions, contributing to a high burden of morbidity and mortality.
Professor Patrizia Burra, Chair of the UEG Public Affairs Group, articulates the pressing need for this transformation: "Digestive diseases affect millions of people across Europe and place significant strain on patients, families, and healthcare systems. This manifesto calls for a culture of partnership—where patients' lived experiences guide research priorities, policy decisions, and clinical practice."
Key Areas for Change
The manifesto identifies three critical areas for enhancing digestive health outcomes:
1. Improved Digestive Cancer Care
Digestive cancers result in over 700,000 deaths annually within UEG member states, making them a leading cause of cancer-related mortality. The manifesto emphasizes the urgent need for reinforced prevention strategies and screening initiatives, alongside better integration of primary care services. Increased public awareness is also highlighted as a crucial factor in promoting early detection and intervention.
2. Utilizing Patient-Reported Outcome Measures (PROMs)
PROMs serve as a vital tool to capture the real-life impacts of digestive diseases and associated treatments. The manifesto advocates for developing co-designed, standardized, and inclusive PROM frameworks. By centering quality of life in healthcare evaluations, they aim to ensure that patient perspectives drive decision-making and reimbursement processes.
3. Enhancing Patient Involvement in Clinical Trials
Involving patients in clinical trials leads to improved design, ethical standards, and relevance to real-world scenarios. The manifesto promotes equitable access to trials through decentralized approaches and introduces a “Patient Inclusive Trial” label to acknowledge exemplary practices. Furthermore, it underscores the importance of providing capacity-building initiatives for researchers.
A Call to Action for Policymakers
In collaboration with various organizations, including AOECS, DiCE, ECPO, ELPA, and others, UEG implores European institutions, national governments, and research organizations to take decisive actions:
- Recognize patient collaboration as a cornerstone of digestive health policy.
- Embrace shared European frameworks for PROMs, clinical trial involvement, and cancer prevention strategies.
- Support coordinated advocacy for the effective implementation of the manifesto.
Professor Burra encapsulates the essence of this manifesto with her emphasis on trust and collaboration: "Transforming digestive health in Europe requires more than scientific advancement. It requires trust, collaboration, and shared ownership. When patients are involved at every stage, prevention, treatment, and innovation truly serve those they are meant to."
Frequently Asked Questions
What is the Digestive Health Roundtable Manifesto 2025?
The Digestive Health Roundtable Manifesto 2025 is a call to acknowledge patients as co-creators in digestive health policy and care, emphasizing their importance in shaping research and practices.
Why are patient voices important in digestive health?
Patient voices are crucial as they provide insights into lived experiences, which can guide research priorities and clinical practices, ultimately improving health outcomes.
What key areas does the manifesto focus on?
The manifesto highlights three main areas: digestive cancer care, patient-reported outcome measures, and patient involvement in clinical trials.
How does the manifesto propose to enhance digestive cancer care?
It calls for improved screening and prevention measures, better integration of primary care services, and heightened public awareness for early detection.
What role do PROMs play in the manifesto?
PROMs are utilized to measure the real-life impact of digestive diseases and treatments, ensuring that patient quality of life is central in healthcare decision-making.
