Disability discrimination and misdirected criticism of the quality-adjusted life year framework

Whose values should count - those of patients or the general public - when adopting the quality-adjusted life year (QALY) framework for healthcare decision making is a long-standing debate. Specific disciplines, such as economics, are not wedded to a particular side of the debate, and arguments for and against the use of patient values have been discussed at length in the literature. In 2012, Sinclair proposed an approach, grounded within patient preference theory, which sought to avoid a perceived unfair discrimination against people with disabilities when using values from the general public. Key assumptions about general public values that beget this line of thinking were that 'disabled states always tally with lower quality of life', and the use of standardised instruments means that 'you are forced into a fixed view of disability as a lower value state' (Sinclair, 2012). Drawing on recent contributions to the health economics literature, we contend that such assumptions are not inherent to the incorporation of general public values for the estimation of QALYs. In practice, whether health states of people with disabilities are of 'lower value' is, to some extent, a reflection of the health state descriptions that members of the public are asked to value.