In Ireland we ask society or the general public to state their preferences for descriptions of health. We then use these valuations or preferences to calculate the impact of technologies on quality of life and this informs how decision makers decide what to fund. This is known as the QALY framework and is used in most jurisdictions to determine benefit alongside value. The majority of national societal valuation studies ask people to imagine being in a health state and the experience of being in a health state is not explicitly captured. However it is likely that a person’s experience of being in a health state will alter their preferences compared to those who are only imagining being in that state. In determining whether treatments represent value for money we mainly consider societal valuations of imagined health states and very little information is included formally from patients. The work proposes to quantify the differences between patients valuations having experienced and not experienced health states and the general population. It will also explore whether non-health aspects, defined as wellbeing are captured by the QALY. Finally it will use a sub population of patients who have cystic fibrosis or multiple sclerosis to construct a value set to test the impact on decisions related to reimbursement of pharmaceutical technologies. The body of work proposed will inform how we establish the Values Framework as laid down in the governments White Paper for Universal Health Insurance.
