Public Health

Patient Reported Outcomes in children’s health services: why should we use them and how can they be embedded in Epic?

Patient Reported Outcomes (PRO) have been used for decades in clinical trials, observational studies, population health surveys, and for estimates of quality of life in economic evaluations. However, the use of PROs as part of routine measurement in clinical settings is relatively new.  In this Grand Round, 3 speakers will discuss the use of PROs in the UK, in mental health at RCH and integrating PROs into the EMR.

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Crowd-funding and other social media use by families

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.

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