Research Involvement Network opportunity: Input to a study aiming to optimise the care and support for pancreatic cancer patients and their families and carers
Type of opportunity
Members of the Research Involvement Network are invited to attend a virtual discussion group taking place 2.30-4.30pm on Thursday 22nd April. The purpose of this session is to give people affected by pancreatic cancer the opportunity to provide meaningful feedback and insight to the researcher leading the study. This is an important part of the research process and helps to ensure that the research being conducted is relevant to the needs of people affected by pancreatic cancer.
Discussion groups will be conducted virtually, via Zoom videoconferencing and should last no longer than two hours.
If you prefer not to take part in a discussion there is also an opportunity to complete an online questionnaire.
About the study
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 pancreatic cancer.
Approximately 20 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.
10-15 Healthcare staff 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 will be presented at co-design workshops to develop prioritised recommendations for pathway improvements, interventions and models, to improve patient and carer experience and quality of life. These will be presented to service users and providers at a celebratory event.
Members of RIN will be given an opportunity to comment and advisee on recruitment of participants, patient information sheets and the interview questions.
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 pancreatic cancer. In spite of the national guidelines for how people with pancreatic cancer should be treated, evidence suggests that patient experience and 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 drafting this proposal and leading the focus group?
Hilary Brown, a PhD student at Oxford Brookes University and an experienced qualitative healthcare services researcher.
When will this opportunity be taking place?
Please express your interest in attending the discussion group by no later than Monday 19th April 2021.
The virtual discussion group is taking place 2.30-4.30pm on Thursday 22nd April.
The online questionnaire will remain open until the end of April 2021.
Who can take up this opportunity?
This opportunity is aimed at anyone who has been affected by pancreatic cancer (any member of the Research Involvement Network).
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. Discussion groups will be recorded, and transcribed verbatim. Recordings will be deleted following transcription.
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 contact the Pancreatic Cancer UK Research Team if you are interested in attending the discussion group.
Alternatively, you can complete the online questionnaire here.