Back to browse newsA special PPI Panel Session was held at the 1st Year PhD Symposium at the Johnston Centre for Cancer Research, QUB on Friday 22nd May.
The PPI Panel was made up of Michael McGreevy, Denver Lynn and Margaret Carr, who each have lived experience of cancer and have worked extensively with researchers as PPI contributors through the Northern Ireland Cancer Research Consumer Forum (NICRCF) or Leukaemia and Lymphoma Northern Ireland. The contributors shared with the students their wealth of knowledge and experience in cancer research. The panel were asked for their thoughts on cancer research and its impacts, how early career researchers can best engage with contributors and what works well, before the discussion was opened to the audience.
Margaret opened the discussion by giving students an overview of PPI and described its distinction from participation or engagement, “PPI is active contribution, where we are equal partners making decisions together”.
The contributors were keen to point out that while PPI may have started in clinical trial research, NICRCF’s 60+ member network increasingly contributes to projects closer to the lab bench. Margaret highlighted too, that though most people work on projects related to their cancer subtype, contributors are interested in all kinds of research.
Michael described the importance of involving PPI early in the research journey and giving contributors as much information as possible. Denver encouraged students, reminding them that they are constantly expanding the circle of knowledge and advancing on the path towards new and better treatments for cancer.
The panellists further described a key focus area for researchers should be around treatment side effects, that it wasn’t enough to kill the cancer, you had to always consider how this would affect the patients too. Margaret reminded students, “The last step is not ‘does it kill the cancer?’. The last step is ‘what does it do to the patient?’”.
When asked about negative studies that show no effect, the panellists described how important these are for building the knowledge base, with Michael remarking, “even if you think it might not work, it will help someone find the thing that will work”.
Michael, Margaret and Denver each shared a take-home message for the PhD students:
“Keep going – what you’re doing is benefitting patients”
“Don’t forget what patients can contribute”
“Never forget the privilege you have in terms of what you do, and the impact that has”
The session was organised by 1st year PhD students, Grace Kennedy, Jodie Byrne and Eman Albahrani, chaired by Fionnuala Petticrew, and supported by Aileen Major, PPI and Engagement Manager from Northern Ireland Cancer Trials Network.
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