Research Involvement Network opportunity: Join a Patient Advisory Panel and help update the Quality of Life questionnaire for pancreatic cancer
Join the Patient Advisory Panel for a project looking to update and validate a well-known health related quality of life measure for people with pancreatic cancer.
The EORTC QLQ-PAN26 was first developed in 1998 and is a quality of life questionnaire for people with pancreatic cancer that is used to supplement the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Given the development of new treatments since this time there is a recognised need to update the questionnaire.
The team want to make patient and public involvement a key part of the updating process by having a dedicated patient advisory panel and would like to invite Research Involvement Network members to take part.
Who can take part
The team would like the panel to be made up of 5-10 people who are patients or carers who are living with, or have/had a relative diagnosed with, pancreatic cancer.
Responsibilities of panel members
- Provide insight and a patient/public perspective to the study.
- Ensure documents and information associated with the study are easy to understand for patients and the public taking part in the research.
- Discuss and comment on the research process described to ensure public perspectives are accounted for.
- Attend panel meetings.
- Participate in any events facilitated by the project team.
- Obtain/maintain membership of the Health and Care Research Wales (and/or other) Public Involvement Community during your time with the study to ensure access to any free training opportunities.
- Provide accurate contact details and inform the study coordinator if your contact details change.
- Participate in the dissemination strategies.
Arrangements for panel meetings
- Confirmation of meetings and event dates, place and times will be provided at a minimum of 2 weeks before each meeting.
- Minutes of the meeting will be kept by a nominated person and agreed by all members of the Panel who attended the meeting.
If you are interested in being part of the panel, please email the research team (firstname.lastname@example.org) with the involvement reference ‘Patient Advisory Panel’ by 15th August 2022.