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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.

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Presentation on theme: "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."— Presentation transcript:

1 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

2 "The future ain't what it used to be" 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 Derek C Stewart former cancer patient former cancer patient Yogi Berra - American baseball player

3 The questions: What research? What research? Whose research? Whose research? Who benefits? Who benefits? Puccini, Sibelius or Ed McBain

4 Patient involvement in Cancer Research NCRN National Cancer Research Network NTRAC National Translational Cancer Research Network NCRI National Cancer Research Institute Consumer Liaison Group Participating in: Selection Panels Board/s Committees Management groups Reviews Conferences

5 Our complicity and culpability Calculated strategy Pull and push Pull and push Terms of reference Terms of reference Developing partnerships Developing partnerships Identifying key individuals Identifying key individuals Recognition and challenge Recognition and challenge Asking questions Asking questions

6 What research? What research are we talking about? What research are we talking about? Scientific, Medical or Patient Focussed Scientific, Medical or Patient Focussed

7 Whose research? To whom does research belong? To whom does research belong? Developing the dialogue Developing the dialogue

8 Who benefits? Why are we doing research? Why are we doing research? Helping to identify priorities Helping to identify priorities

9 Future Working together with people affected by cancer to: Ask quality questions Ask quality questions Help influence priorities & agendas Help influence priorities & agendas Make research meaningful Make research meaningful Bring different skills and knowledge Bring different skills and knowledge Empower individuals Empower individuals


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