One of the growing worldwide challenges in paediatric health care is how to understand and respond to some of the many ways in which families of sick children use social media. This presentation draws together a number of strands of thought from my recent sabbatical in the UK, where the paediatric hospital staff are still experiencing the flow-on effects of the high-profile (and high-conflict) social media campaigns run by parents of Charlie Gard and Alfie Evans. I will present some data from two recent studies of how families in UK and Australia use social media, especially crowd-funding, and then raise for discussion some of the ethical and social challenges arising from social media use. Some questions include – how could and should clinicians respond to crowd-funding campaigns by patients’ families? What about misleading or false information about the child’s medical condition and treatment being put out by families, or abuse or threats against clinicians? How can the child’s privacy be protected when everyone is talking about them? How can families be protected from the unforeseen and unwanted consequences of the social media use? What is the role of the hospital on any of these matters? Lots of questions, no clear answers, but the only way we can get anywhere is to talk about it.
Professor Lynn Gillam is the Academic Director of the Children’s Bioethics Centre at RCH, and Professor of Health Ethics in the School of Population and Global Health at the University of Melbourne.