Patient and general public preferences for health states: A call to reconsider current guidelines

In economic evaluations of health care interventions, benefits are often expressed in terms of Quality-Adjusted Life-Years (QALYs). The QALY comprises length and quality of life into one measure which allows cross-disease comparability. The quality adjustment of the QALY is based on preferences for health states. An important normative choice is the question whose preferences for states of health we wish to capture. The answer to this question is directly related to the normative question regarding the appropriate maximand in health care decisions. Currently, preferences are commonly derived from the general public, rather than from actual patients. This choice, which can have large consequences on final outcomes of economic evaluations, has always been a topic of debate. This paper clarifies and furthers the discussion regarding the appropriate source of preferences for health state valuations, acknowledges the plurality of different perspectives, and argues that health economic guidelines could require analysis of benefit in terms of QALYs based on both patient and general public preferences. •Preferences for health states of patients differ from those of the general public.•These differences reveal relevant information about perceived quality of life.•Both patient and general public preferences are a valid source of utility values.•Guidelines could require ICERs based on both sources of preferences.