Healthcare researchers and decision makers have long grappled with the problem of valuing patient health outcomes. Patients routinely object that conventional methods for quantifying these outcomes fail in various ways to represent their experiences with healthcare. In particular, measures of value need to be:
- More inclusive – incorporating the full range of factors that mediate how patients experience healthcare;
- More relevant – retaining their salience to the particular patient population of interest;
- More personalized – allowing for variation in the preferences of individual patients.
IVI intends to drive new work in this area by leading research that bridges the gap between patient-centered and value-based healthcare. Such work must build on existing science, yet add incrementally to our understanding of how to quantify value with the patient in mind.
As a first step, IVI will develop a more patient-centered measure of quality-adjusted life years (QALYs) that better captures the experience of patients with a specific disease. QALYs are a commonly used approach to measuring the health benefits of a medicine or intervention that captures changes in patients’ (or populations’) health by adjusting the number of life years gained or lost for the quality of life experienced by those living with a certain condition. Under the QALY approach, years of life are multiplied by a number between 0 and 1 that is meant to capture the desirability of overall quality of health in that year, where 0 is equivalent to death and 1 is perfect health. These “health state utilities” are generally derived using surveys and other instruments that are developed for general use – not for specific disease areas. On one hand, this allows for easier comparison across disease areas, since a QALY in cancer, for example, is theoretically the same as a QALY in diabetes treatment. On the other hand, the experiences of patients with different diseases vary fundamentally, and an understanding of the benefits and costs of treatment in a disease like cancer — where the stakes and treatment costs are both high — may be seriously flawed if QALY measures are not specific to that disease.