Patient-Reported Outcomes 

The Opportunity

The increasing integration of delivery systems provides an opportunity to manage the entire patient-focused episode of care and to assess the impact of care on patient outcomes, including patient-reported outcomes (PROs). PROs have been defined as "any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else." In other words, PRO tools measure what patients are able to do and how they feel by asking questions. These tools enable assessment of patient–reported health status for physical, mental, and social well–being. A wide variety of patient-level instruments to measure PROs have been used for clinical research purposes; many have been evaluated and catalogued within NIH's Patient Reported Outcomes Measurement Information System (PROMIS). While PROMIS and other initiatives have validated patient-level outcome measures and instruments, there are two major challenges to using them for purposes of accountability and performance improvement:

1. They are not in widespread use in clinical practice.
2. Little is known about aggregating these patient-level outcomes for measuring performance of the healthcare entity delivering care.

While there has been great interest in using PROs, foundational work needs to be done to address methodologic and data challenges. Efforts are currently underway to develop and test mechanisms for collecting patient-reported data. Accordingly, this is an opportune time to also consider the methodological issues surrounding use of such data when available in performance measurement. These issues include collecting patient-reported outcome data in the clinical environment and the aggregation of the data to assess organization/provider-level performance.

About the Project

This project will include convening an expert panel, two commissioned white papers on the methodological issues, and a workshop to review the papers and Expert Panel’s recommendations.

Two commissioned papers will help inform next steps regarding 1) selection of PROs for use in performance measures and 2) the path to developing reliable and valid performance measures eligible for NQF endorsement that can be used for accountability and to inform quality improvement. The papers will describe and explain the key methodological issues and how they can be addressed, and identify best practices for measure construction and testing so that the NQF criteria for endorsement can be met.

The workshop will bring together stakeholders needed to make PRO-based performance measures a reality, including researchers, clinicians, performance measure developers, and data collection/platform engineers. The purpose of the workshop is to:

• identify and promote understanding of the key methodological issues that need to be addressed in developing and using PRO-based accountability measures and implications for applying NQF endorsement criteria;
• identify the capacity required for PRO-based accountability measure development and testing; and
• identify the capacity required for potential test beds for measure testing; and
• identify a critical pathway including timetable with key milestones for submitting measures to NQF for endorsement.

Funding 

This project is supported under a contract provided by the Department of Health and Human Services.

Contact Information 

For more information, please contact either Karen Pace, PhD, MSN at 202-559-9476 or Gene Cunningham, MS at 202-559-9537. You may also contact us via e-mail at pro@qualityforum.org.