What do participants need to do: Take part in focus group discussions
How long will it take? 2 x 1-hour meetings. Participants may also be invited to review a summary of the project
Will participants get paid? No
Is this for research, policy or services? Research
Who can take part? Individuals with lived experience of pancreatic cancer, including patients, family members, and carers.
Deadline: 05 June 2026
Location: Online
Pancreatic cancer is one of the hardest cancers to detect early, and survival rates are low. Many people are diagnosed only when they become very unwell and require emergency care. This is because the symptoms of pancreatic cancer can be vague and easy to miss.
Researchers at Public Health Wales are developing a research proposal that aims to understand what happens to people in the months and years before their diagnosis. This will be using securely stored, anonymised health records from people living in Wales, which do not include names or personal identifiers. The records include information from GP visits, hospital admissions, outpatient appointments, emergency care, and death records. All data are held safely within the Secure Anonymised Information Linkage (SAIL) Databank.
They will look at 1) who develops pancreatic cancer, 2) what symptoms they experience, and 3) how often they use healthcare services such as their GP or hospital. By understanding these patterns, they hope to identify groups of people who may be at higher risk based on patterns in symptoms and how they use healthcare services before diagnosis. This is especially important for people who do not have known genetic risk factors.
People affected by pancreatic cancer have an essential role in shaping this work. They are inviting patients, family members and carers to provide input at the pre-funding stage to ensure the research reflects real-world experiences and priorities. People affected by pancreatic cancer can help them understand what matters most to patients and families, especially experiences of symptoms recognition, help-seeking, diagnosis, and interactions with healthcare services.
Public input will help refine the research questions and outcomes before the funding application is submitted, so they are meaningful, relevant, and reflect the priorities of patients and their families.
Involvement will include taking part in one or two online group discussions (around one hour each) and, if interested, reviewing short lay summaries. One online meeting will discuss the project aims, priorities, and relevance. A second online meeting will be held to present the revised study design and gather further feedback.
No research or public involvement experience is required. They aim to involve approximately 3-5 public contributors.
This involvement is at the pre‑funding stage and payment is not available.
Contributors will gain insight into how health research using anonymised data is conducted. Contributions will be acknowledged in the study proposal and outputs where appropriate.
To express interest or find out more, please contact: Manar Alshams by emailing manar.alshams@wales.nhs.uk
