Research Involvement Network

Work in partnership with researchers to help shape their work by sharing experiences of diagnosis, treatment and care

Our Research Involvement Network is a group of people who each have a personal connection to pancreatic cancer, including patients, carers, loved ones and survivors. They help shape Pancreatic Cancer UK’s work and the work of researchers by getting involved in a variety of different opportunities ranging from commenting on lay summaries before funding applications are submitted, reviewing applications, attending focus groups, reviewing patient information sheets and sitting on committees for different clinical trials.

The group has a diverse range of views and experiences and their insight helps to ensure that only the highest quality research is being conducted.

Why is your involvement important?

By involving people affected by pancreatic cancer at all stages of the research process, we’re able to increase our understanding of pancreatic cancer and ensure that the research being conducted is relevant to the needs of people affected by pancreatic cancer. This means moving beyond thinking of patients  as participants in a study, but as partners in setting research priorities, selecting the research that should be funded and guiding researchers with their work. No research background is required to be a member of the Network.

What can you expect from being part of the group?

Through monthly bulletins, we keep the network up to date on the latest research involvement opportunities, events and news.

Members can choose how, when and to what extent they want to contribute and can be involved as much or as little as they like.

I can't tell you how much this is helping me. It's now been 8 years since losing my sister Lorraine, and the experience was so devastating it is still raw. If we (I'm including Lorraine here) can help others affected by pancreatic cancer then it wasn't all for nothing.

Jackie Edgeller, Member of the Research Involvement Network

How can I get involved?

If you’re looking to join the Research Involvement Network, please fill in the application form below. You can also contact us via

If you’re a researcher and would like to find out how you can involve people affected by pancreatic cancer in your research, please visit our lay involvement page

Join the Research Involvement Network

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Take a look at some of this month’s opportunities for members of the Research Involvement Network


Project summary review: Understanding genetic differences across patients to aid the development of better strategies for the early detection of pancreatic pancer

Dr Marta Canel is applying to the Pancreatic Cancer UK Career Foundation Fellowship to fund her research. She is looking for feedback on her project which aims to understand the genetic differences across patients to help better strategies to allow early detection of pancreatic cancer.

Find out more

Join a focus group: Providing how well a treatment is likely to work personalised to an individual as part of shared decision making in healthcare

Professor Kurinchi Gurusamy and his team at University College London have developed a prototype software that can calculate and present the personalised treatment effects. This app can allow easy customisation to different diseases, patient and healthcare provider characteristics, with results being shown as text and pictures.

Kurinchi is inviting individuals to join him for a focus group to ask for your insights on whether this app would be useful to you.

Find out more

Join a focus group: Analysis of pre-cancerous cyst lesions in the pancreas to identify those at high risk of progression to cancer

Mari-Claire McGuigan, a PhD student from the University of Glasgow, wants to understand pancreatic cyst biology to then be able to predict which cysts are more likely to progress to cancer. Mari-Claire is inviting patients who have either had surgery for cancer or surgery for cysts which had cancerous cells in them to join her for a focus group to ask for your insights on her project.

Find out more

PANCOS: Evaluating the results of pancreatic cancer surgery

Emily Britton is a senior HPB surgical trainee from the University of Bristol undertaking an MD project to develop a Core Outcome Set (COS) by which to measure the safety and efficacy of surgical treatment for pancreatic cancer. Currently there is no standardisation of outcomes used in studies investigating surgical treatment of pancreatic cancer making it difficult to combine the results of different studies. Emily aims to develop a COS agreed between patients, carers and healthcare professionals which will represent the minimum outcomes that should be reported in any study or evaluation of surgery for pancreatic cancer.

The project has three phases. In the first, a long list of outcomes is generated by systematically reviewing outcomes published in the existing literature and conducting interviews with patients and healthcare professionals to ensure no important outcomes have been missed. In the second phase, this long list is reduced to a short list through a standardised scoring questionnaire in which all stakeholders vote for their most important outcomes. In the final phase, the short list is condensed to the final COS through structured voting and discussion at a consensus meeting of a group of patients and healthcare professionals.

Emily is asking for individuals who are happy to undertake a questionnaire or be interviewed for this research project to contact her. If you would like more information or you are interested in being involved in her project, please email Emily at