This Grand Round will feature two presentations on the ethical complexities of decision-making for children with life-limiting conditions. While shared decision-making is the accepted ethical approach, the devil is in the detail.
Launched in June of 2021, the Centre for Health Analytics has now been operational for a year. With a vision to unleash the power of data to improve child and adolescent health, the Centre will share some early successes and show how we’re aligned to similar initiatives in the NHS. This presentation will spark new ideas of how to use data, and provide insights into how best to engage with the Centre for Health Analytics to deliver high value data rich work.
Speaker
Professor Jim Buttery is a paediatric infectious diseases physician and vaccinologist. He is the inaugural Professor of Child Health Informatics at the University of Melbourne. He is Head of Health Informatics, Epidemiology and Signal detection at SAEFVIC (MCRI) and Chief Clinical Research Information Officer & Infectious Diseases Physician at The Royal Children’s Hospital (RCH). Prof Buttery also serves as a member of the TGA Advisory Committee on Vaccines.
Trials typically report outcomes that lack relevance to patients and caregivers trying to make treatment decisions. Also, outcomes are often reported inconsistently which impairs evidence synthesis. Core outcome sets can address these important shortcomings with current trial outcomes by developing a set of outcomes to be routinely reported in all trials in a particular field.
Among individuals with cerebral palsy (CP), rehabilitation needs and treatment have been established, but are mostly focused on the pediatric population. Evidence demonstrates that the number of adults who live with CP and other childhood-onset disabilities is increasing, and that they experience significant physical and mental health inequalities as they grow up.
