The project
Dr Sudip Sanyal’s study follows UK pancreatic cancer patients and their carers across all treatment pathways to map true recovery. Crucially, patients and carers are full research partners, co-leading the study and shaping it through workshops to ensure it covers what matters most to families. By tracking quality of life, independence, and a new tracking score over a year, his team will evaluate how choices affect everyday well-being. Working with Pancreatic Cancer UK, the findings will create a practical online tool to help patients and NHS doctors make shared care decisions, whilst improving countrywide support.
What are they going to do?
The study will follow approximately 500 patients from three English hospitals, alongside their carers, throughout their specific care pathway. Over one year, participants will complete short questionnaires tracking their symptoms, quality of life, and independence at multiple intervals. Some will also participate in in-depth interviews to share their personal experiences. Recovery will be measured using trusted quality-of-life forms and an innovative combined score tracking time spent well at home versus in hospital. Sudip’s team will also analyse the financial impact of treatments and complications on NHS resources.
Why is this research important?
About 10,500 people in the UK face pancreatic cancer annually, yet survival rates remain low, and patients lack vital information on how different treatments impact daily survival and independence. By bridging this knowledge gap, the study directly empowers families. The main outcome – a practical online tool – will enable patients and NHS doctors to make truly shared, personalized care choices based on real-world quality of life data. Ultimately, it ensures patients retain control over their journey, while helping the NHS deliver better, nationwide post-treatment support.
How do I get involved?
Dr Sudip and his team are looking to recruit representatives with a lived experience of pancreatic cancer to advise on several areas of Patient and Public Involvement (PPI) required for this study, namely:
1. Shaping the Proposal (Pre-submission):
- Participating in two patient-and-carer workshops and one workshop specifically for under-served groups. (Taking place on 5th Oct, 7th Oct, 9th Oct – all between 5-6pm.)
- Working alongside a named PPI Lead to refine the research protocol and ensure it focuses on what matters most to families (e.g., independence and avoiding prolonged hospital stays).
2. Leading and Oversight (During Study Delivery):
- Acting as co-applicants on the project team, which explicitly includes a patient and a carer with lived experience of pancreatic cancer.
- Sitting on the Study Steering Committee to provide governance and oversight throughout the 36-month timeline.
- Joining a Patient Advisory Group that meets quarterly to guide the study’s progress and check its delivery.
3. Co-designing Outputs & Dissemination (Post-study):
- Co-designing prototype resources, including a patient-friendly recovery prediction model and a shared decision-making tool.
- Helping the research team create and share patient-friendly summaries of the findings so they are useful and easy to understand for the public.
Meeting Frequency
- Trial Steering Committee (includes 1 patient and 1 caregiver co-applicant): Meets six-monthly (every 6 months).
- Patient Advisory Group: Meets quarterly (every 3 months).
- Study Management Group (includes PPI representatives): Meets monthly.
The PPI opportunity is aimed at the following individuals:
1. Patients with lived experience of pancreatic cancer. This includes people who have gone through any of the three main care pathways:
2. Curative surgery (a major operation) [1]
- Disease-control chemotherapy [1]
- Symptom-control/supportive care (comfort care) [1]
3. Carers and family members of someone who has been affected by pancreatic cancer.
4. Individuals from historically under-served communities. The study is making a dedicated effort to involve:
- Older adults (aged 75+) [1]
- People from lower socioeconomic or deprived backgrounds [1]
- People from ethnic minority backgrounds [1]
- Those living with frailty [1]
The specific roles you can take part in:
1. Patient Advisory Group Members: To meet quarterly and guide the progress of the study.
2. Co-Applicants / Steering Committee Members: For one patient and one carer to take on a higher-level leadership role, sitting on the Trial Steering Committee to oversee the whole project.
3. Workshop Participants: To attend pre-submission and setup workshops to check that the research plans cover what matters most to families.
No scientific background or prior experience is needed to take part in this opportunity.
Next steps
If you are interested in joining any of the aforementioned PPI activities for this study or would like more information, please email Sudip (sudip.sanyal1@nhs.net) quoting the involvement reference ‘Pancreatic Cancer UK RIN Participation’.
