Kerry Woolfall is a social scientist and senior lecturer at the University of Liverpool. This talk, our second from the PERUKI track, she talks about doing research without prior parent and patient consent. Following legislative changes in 2008 it is now possible (in the UK at least) to enter a child into a trial of potentially life-saving treatment then seek consent after the fact. But how would parents react to this? How would clinicians? What would happen if a child died during the trial, as may understandably occur if we are looking at potentially life-saving interventions?
This talk is not just about a researchers point of view but also details Kerry’s experience from the other side of the clipboard as a NICU parent.
The research embodies a core principle of engagement.
You can read some of the research here.
Woolfall K, Young B, Frith L, Appleton R, Iyer A, Messahel S, Hickey H, Gamble C. Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting. BMJ open. 2014 May 1;4(5):e005045.
Woolfall K, Frith L, Gamble C, Gilbert R, Mok Q, Young B. How parents and practitioners experience research without prior consent (deferred consent) for emergency research involving children with life threatening conditions: a mixed method study. BMJ open. 2015 Sep 1;5(9):e008522.
You can follow Kerry on Twitter here.
This talk was recorded live at DFTB19 in London, England. With the theme of “The Journey” we wanted to consider the journeys our patients and their families go on, both metaphorical and literal. DFTB20 will be held in Brisbane, Australia.
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