Earlier this year, we piloted a new PPI Grants scheme support active public involvement in health-related research at QMUL. We supported the Pancreatic Cancer Research Fund Tissue Bank at Barts Cancer Institute hosted an interactive discussion-led event with patients and families. Rhiannon Roberts shares her experiences of the day
18 July 2018
The Pancreatic Cancer Research Fund Tissue Bank (PCRFTB) welcomed pancreatic cancer patients and their families to a public engagement event on 2nd July. The group included individuals who had previously donated samples to PCRFTB. The event was hosted by the PCRFTB Chief Investigator Professor Hemant Kocher, with the intention of keeping patients at the heart of the tissue bank, and allowing them to have a key input into our policy development and decision-making processes.
Attendees were given an overview of various aspects of PCRFTB activities, including the consenting process and the steps involved from sample collection through to distribution to Researchers. The PCRFTB team also explained how donor and sample anonymity is maintained and the procedure for withdrawing consent. Finally the governance framework and regulatory bodies involved with tissue banking and research were also explained.
Following this introduction, attendees were asked to provide feedback on all topics in small group discussions. Additionally PCRFTB consent forms and patient information sheets were reviewed by attendees and opinions on their clarity and ideas for improvements were provided. Feedback was also given on the timings that PCRFTB staff approach patients in clinics, as PCRFTB are aware of the sensitivity surrounding a suspected or newly confirmed diagnosis of pancreatic cancer. Previous donors shared their experiences of when they were first approached by PCRFTB and asked if there were aspects that could be improved.
The afternoon ended with a tour of the Barts Cancer Institute’s Tissue Bank Laboratories and Facilities allowing attendees to see how samples are processed and stored, and ask further questions.
At the end of the meeting attendees were asked to complete an anonymous questionnaire about the engagement event. The results from the returned questionnaires were overwhelmingly positive, with all participants saying that they found the event very interesting and would like to attend a similar event in the future. When asked which aspect of the event did you most enjoy, comments included:
The viewpoints and ideas for improvement will be shared with all the PCRFTB national collection centres. The advice from the meeting will be implemented to benefit the experience of all future donors to PCRFTB. PCRFTB are very grateful to the Centre for Public Engagement for funding this event and to the patients and their families who took part in sharing their views.