End users of the QUOKKA research program include Federal and State Government decision-makers including the Pharmaceutical Benefits Advisory Committee (PBAC) and the Medical Services Advisory Committee, children and their families, private industry, health care providers and paediatric researchers.
Science vs. Value judgements in measuring and valuing paediatric HRQoL: Involving decision makers in our research
Final choices about methods to value paediatric HRQoL unavoidably involve making value judgements. For example, should values for paediatric HRQoL be based only on opinions of the adult general public (as is conventional) or also include childrens’ views and preferences? And while research can tell us whether adults valuing the HRQoL of a 12 year old give higher/lower values than when valuing HRQoL for a 5-year old, if we do observe a difference in values, a value judgement is needed to decide whether to produce one value set covering all children, or different value sets for specified age ranges. These are non-trivial questions which empirical research alone cannot resolve. Our research is guided by our Decision Makers’ Panel (DMP) to ensure that outputs from our research, and all methods choices that require judgement, appropriately reflect a range of important perspectives.