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Are we culpable?. How culpable was he That last night when he broke Our tribe’s complicity? ‘Now you’re supposed to be An educated man,’ I hear him say. ‘Puzzle me The right answer to that one.’ ‘Casualty’ 1979 Seamus Heaney.
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Are we culpable? How culpable was he That last night when he broke Our tribe’s complicity? ‘Now you’re supposed to be An educated man,’ I hear him say. ‘Puzzle me The right answer to that one.’ ‘Casualty’ 1979 Seamus Heaney
"The future ain't what it used to be" Yogi Berra - American baseball player A short presentation on the quiet, yet significant, changes in engaging people affected by cancer in cancer research and some of the unanswered questions. Derek C Stewart former cancer patient
The questions: • What research? • Whose research? • Who benefits? Puccini, Sibelius or Ed McBain
Patient involvement in Cancer Research • Participating in: • Selection Panels • Board/s • Committees • Management groups • Reviews • Conferences NCRI National Cancer Research Institute NCRN National Cancer Research Network NTRAC National Translational Cancer Research Network Consumer Liaison Group
Our complicity and culpability Calculated strategy • Pull and push • Terms of reference • Developing partnerships • Identifying key individuals • Recognition and challenge • Asking questions
What research? • What research are we talking about? Scientific, Medical or Patient Focussed
Whose research? • To whom does research belong? Developing the dialogue
Who benefits? • Why are we doing research? Helping to identify priorities
Future Working together with people affected by cancer to: • Ask quality questions • Help influence priorities & agendas • Make research meaningful • Bring different skills and knowledge • Empower individuals