Synopsis

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. Consensus research methods including nominal group technique and the Delphi method have been around since the 1950’s and applied to diverse areas such as the development of clinical practice guidelines, medical education and the allocation of scarce resources. More recently, they have been used extensively in establishing core outcome sets. Using the example of glomerular disease, I will show how qualitative and mixed methods can be used to establish a core set of outcome domains among diverse stakeholder groups. I will review other examples and applications of these methods, including their evolution online during the SARS-CoV-2 pandemic.

Speaker

Dr Simon Carter is a consultant paediatric nephrologist at The Royal Children’s Hospital. He completed a renal fellowship at Sickkids, Toronto, between 2015 and 2017 and worked at the Children’s Hospital at Westmead in 2018 before returning to RCH. Simon has completed a Masters of Medicine (Clinical Epidemiology) and PhD through the School of Public Health at the University of Sydney. His doctorate attracted NHMRC funding to develop a core outcome set for trials in adults with glomerular disease (SONG-Glomerular Disease). Simon’s research uses qualitative and consensus methods to establish critically important outcomes for trials among patients, care partners and health professionals. Simon is on the Standardised Outcomes in Nephrology coordinating committee (SONG) and the Australasian Kidney Trials Network (AKTN) scientific committee, and he is the current chair of the glomerulonephritis working group.