Quantifying the Patient Experience2019-01-31T17:01:27+00:00


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:

  1. More inclusive – incorporating the full range of factors that mediate how patients experience healthcare;
  2. More relevant – retaining their salience to the particular patient population of interest;
  3. 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.


To test the use of disease-specific QALYs, IVI is developing an approach to build QALY measures specific to non-small cell lung cancer (NSCLC). Building on existing published literature, IVI will develop a conceptual framework to guide the development of a survey instrument for measuring health state utilities for patients with NSCLC. With input from patient focus groups, IVI will develop a discrete choice experiment survey module to measure how NSCLC patients trade off key health states, side effects, and other treatment considerations. Based on the results of this survey, IVI will develop a NSCLC-specific measure of QALYs.


IVI literature review is currently underway and researchers are developing a conceptual framework, with review/insight from patient organizations. IVI anticipates focus groups and administering a patient-focused survey during the summer of 2019.

How Patients are Partners in this Work

IVI is committed to involving patients and patient-focused organizations in the development and execution of its research and model development work. For this project, we involve patients in the following ways:

  • Feedback on study design
  • Contribution of patient-focused data (e.g., from surveys) from patient organizations addressing value factors for patients
  • Review of focus group guide and survey instruments
  • Review of draft findings and papers
  • Opportunity to review final manuscript and collaborate on dissemination