Patient ranking reshaped the research agenda in oesophagogastric cancer
Research priorities for oesophageal and stomach cancers have often been set by experts alone, but this UK and Ireland partnership exercise shows how differently the field looks when patients are given a formal role in ranking uncertainty. Across prevention, diagnosis and staging, treatment, palliative care, and survivorship, patients and healthcare professionals helped distill thousands of submitted questions into a focused list of research uncertainties judged worthy of the next wave of work.
The exercise began with a wide net. Patients and healthcare professionals submitted 4,295 potential research uncertainties, which were consolidated into 92 prioritized questions after systematic review confirmed that each reflected a genuine unresolved issue. In total, 835 respondents contributed across the scoping and prioritization surveys, split between 395 healthcare professionals and 440 patients. The professional group was broad, spanning 25 specialties or roles across community and hospital practice, which matters in a disease area where care often stretches from symptom recognition in primary care to complex multimodality therapy in tertiary centres.
One of the clearest findings arrived abruptly: patient input changed 22.2% to 46.3% of the rankings initially established by healthcare professionals.
Nutrition, quality of life, and treatment tailoring rose to the top
The final top 20 priorities were not confined to a single stage of illness or a single therapeutic problem. Every domain in the framework appeared among the highest-ranked questions, which signals how oesophagogastric cancer is experienced as a full disease trajectory rather than a narrow surgical or oncologic event. Five of the top priorities focused on personalising treatment and combining modalities more effectively. That pattern fits the biology and clinical behaviour of these cancers: local invasion, early dissemination, treatment toxicity, and wide variation in host reserve all make one-size-fits-all pathways unreliable.
The other dominant themes were nutrition and quality of life, including for people whose cancer cannot be cured. In oesophageal and gastric malignancies, dysphagia, early satiety, weight loss, cachexia, and treatment-related gastrointestinal toxicity can erode function long before the disease reaches its terminal phase. Patients placed these burdens near the centre of the agenda, not at the margins, which reflects a bedside truth clinicians see repeatedly: maintaining intake, strength, and daily function can determine whether a patient tolerates therapy at all.
A narrow survival focus would miss a large part of the clinical burden.
Why patient weighting changed the hierarchy
The methodology went beyond simply counting votes. Research questions were first collected from patients and healthcare professionals, then consolidated into meaningful uncertainties, then checked against the literature to confirm that no adequate answer already existed. After that, an interdisciplinary group of healthcare professionals scored each question for potential impact, and a patient survey supplied the weighting used to prioritize the list. This design gave patient experience real leverage over the final order rather than treating it as an ornamental consultation.
In practice, that approach altered the final rankings in a substantial share of items. The shift is clinically important because professional groups often lean toward endpoints that are easier to measure in trials, such as response rate, resectability, or survival, while patients may rank issues such as eating, fatigue, pain, and the ability to remain at home higher than investigators usually do. Both perspectives matter, but they do not always point in the same direction. By quantifying the difference, the exercise turns a familiar tension into an actionable funding guide.
What the priority list means for future trials
The highest-ranked questions point toward studies that are more integrated than many traditional oncology projects. Five top priorities on treatment personalization and combination strategies suggest an unmet need for better matching of therapy to disease biology, patient fitness, and symptom burden. That could include work on how to combine treatments more effectively, though this article does not specify particular regimens or technologies. The larger message is more general: outcomes in oesophagogastric cancer are unlikely to improve through escalation alone unless treatment intensity is aligned with the patient’s ability to sustain it.
Nutrition emerged as a priority in its own right, not merely as supportive care around the edges of oncology. That placement has direct implications for trial design. Studies in this space may need to measure more than survival or recurrence and include outcomes that capture swallowing, weight stability, nutritional status, function, and symptom control during and after treatment. The same logic applies to survivorship, where patients living with chronic side effects may define success very differently from a clinician focused solely on disease control.
Palliative care and survivorship sit inside the core disease burden
The inclusion of palliative care and survivorship among the highest-priority domains is a reminder that oesophagogastric cancer frequently produces suffering across the full disease course. Some patients will not be cured, and others will live with prolonged consequences of treatment even when the cancer responds. Research that ignores this reality risks producing results that are scientifically neat but clinically incomplete.
The patient-and-professional partnership used here creates a usable map for funders, policymakers, and investigators. Because the list was built from both broad consultation and confirmation of true uncertainty, it carries more weight than a simple preference survey. It can guide grants toward questions that are both unanswered and important to the people who live with these cancers. It can also help researchers avoid duplicating work in areas where the clinical value would be limited.
The final product is not a generic appeal for more research. It is a ranked list shaped by the voices of 440 patients and 395 healthcare professionals, filtered through 4,295 raw suggestions, and narrowed to 92 uncertainties after review. The remaining challenge is not whether the field has questions; it does. The challenge is whether future studies in oesophageal and stomach cancers will now test the issues patients ranked highest: better treatment selection, more effective combinations, nutritional support, and quality of life during the long arc of illness.