Lay involvement in research

Find out how you can involve people affected by pancreatic cancer in your research.

Pancreatic Cancer UK involve patients and public at all stages of our research, including the development of our Research Strategy, reviewing funding applications and membership on our Scientific Advisory Board.

Our Research Involvement Network

Working in partnership with people living with or affected by pancreatic cancer can enhance your work at all stages of the research process.

Our Research Involvement Network is made up of over 250 people with lived experience of pancreatic cancer. This includes patients, survivors, carers and family members. Members of the network have all expressed an interest in getting involved in research, providing a unique resource to researchers who wish to involve people who have been affected by pancreatic cancer in their work.

For more information about the value of involving people affected by pancreatic cancer in your research read this blog by Dr Dom O’Connor, Queen’s University Belfast: Working in partnership with people affected by pancreatic cancer: A researcher’s perspective.

When to involve people affected by pancreatic cancer in your research

1. Work with people affected by pancreatic cancer from the very beginning of your work by seeking input when writing a grant application (even if your research is more basic science this will be useful). This could be working with one individual as a co-applicant or via focus groups/ virtual zoom workshops with a group. This input at an early stage can help with the design of your project ensuring that it is appropriate and meets the needs of people with pancreatic cancer, as well as helping to ensure that the lay summary is clear. In addition, this is something that funders, including Pancreatic Cancer UK, look for when reviewing applications and deciding which projects to fund.

2. If you are intending on recruiting patients to participate in your research, ensure that your patient information sheet and study protocol are reviewed by people affected by pancreatic cancer before they are submitted for ethics review.

3. When convening Committees or Steering Groups that will meet throughout the duration of the research, try to make sure that people affected by pancreatic cancer are fully represented.

4. Towards the end of your research, disseminate your findings and continue to work with people you involved at the beginning to show what the outcome has been and to discuss what the next steps might be.

5. In general, think of all the different ways that someone who has been affected by pancreatic cancer could enhance your work. This could be through attending events, speaking in public, getting involved with campaigns or responding to surveys and commenting on documents.

Accessing the Network

We send a monthly bulletin out to the Network with links to more information about opportunities to get involved in research.

If you have any questions or would like to contact our network with an involvement opportunity via the bulletin, please complete the researcher application form below and email it to the Pancreatic Cancer UK Research Team.

Research Involvement Network Researcher application form (doc)