Research Involvement Network opportunity: Provide input on a study aiming to optimise the care and support for patients with incurable pancreatic cancer and their families and carers

Have input in the OPTIMISTIC study; aiming to optimise the care and support for patients with incurable pancreatic cancer and their families and carers.

Type of opportunity

Members of the Research Involvement Network are invited to review and feedback on a number of documents which will be given to patients and their families during this study. The purpose of this activity is to provide meaningful feedback and insight to the researcher leading the study to ensure the information provided in the documents is clear and appropriate.  The documents will include:

  • A brief introduction to the study
  • A participant information sheet, explaining to people what their participation in the study would involve
  • A topic guide that the researcher would follow in interviews with participants
  • A diary or log sheet that participants could use to help them keep a record of their treatment and appointments and any other relevant information that they might want to share with the researcher.
  • The consent form
  • The GDPR privacy notice

Please note: the researcher understands that individuals may not have time to review all of the documents and is grateful for any feedback from people affected by pancreatic cancer.

If you would prefer to have a telephone or video conference (Zoom) discussion with the researcher, as opposed to giving written feedback, then please get in contact with the Research Team.

About the study

OPTIMISing the care and support for patients with pancreaTIC cancer and their families and carers (OPTIMISTIC). This is full-time funded PhD project incorporating experience-based co-design (EBCD) principles, to establish how we can optimise the care and support provided to patients and their families/carers following a diagnosis of incurable pancreatic cancer.

Approximately 25 patients (if well enough) and a patient-nominated family-carer will be interviewed individually at one month following diagnosis, and if possible, again at three and six/nine months to understand their experiences and map their care journeys. Approximately 25 healthcare professionals who come in to contact with patients with pancreatic cancer, will be interviewed to gain their understanding of how services are currently delivered and any challenges they encounter that impact on providing optimum care.

The findings from these interviews will be shared and discussed at events for patients, their families and healthcare professionals in order to jointly develop recommendations for improvements in the care that is provided.

Members of the RIN were previously given an opportunity to comment on the relevance of the study and how patients might be recruited. They are now are invited to give feedback on the documents that have been prepared since the first discussion group took place.

How will the study benefit people affected by pancreatic cancer?

The study aims to establish how we can optimise the care and support provided to patients and their families/carers following a diagnosis of incurable  pancreatic cancer.

In spite of the national guidelines for how people with pancreatic cancer should be treated, evidence suggests that patient experience, treatment and outcomes are still subject to variation. The reasons for variation are complex and some variation can be justified because of clinical and personal circumstances. However, we also know that the way care is organised and delivered can also lead to variation which is less easy to justify. A survey exploring experiences and supportive care needs of patients with pancreatic cancer, conducted on behalf of Pancreatic Cancer UK demonstrated that almost half of respondents reported one or more moderate to high unmet needs within the month prior to them completing the survey – psychological support and physical support were reported as leading to the biggest gaps in care.  This study aims to explore these gaps in care in more depth, and work towards developing potential solutions in partnership with patients, their families/carers and healthcare professionals.

Who is conducting the research?

Hilary Brown, a PhD student at Oxford Brookes University and an experienced qualitative healthcare services researcher.

Who can take up this opportunity?

This opportunity is aimed at anyone who has been affected by pancreatic cancer. Participants do not need to have been at the first discussion group.

What steps will be taken to ensure that information about participants is stored and used in compliance with the provisions outlined in the General Data Protection Regulation (GDPR)?

Data will be kept on a password protected computer. Any personal data will only be used for the purposes of this project.

The researcher will not at any point have details of individual’s email addresses, postal addresses or telephone numbers.

What next/who to contact:

Please send your expression of interest to the Research Team by no later than 30th September. We will then send you the documents for review along with guidance for reviewing.

Please note that we won’t have the finalised documents until w/c 20th September, but will send them to those who registered their interest as soon as we have them.