Resource Title

Collecting Patient Reported Outcomes: Lessons from the California Joint Replacement Registry

Abstract

Context: While patient-reported outcomes (PROs) have long been used for research, recent technology advancements make it easier to collect patient feedback and use it for patient care. Despite the promise and appeal of PROs, substantial barriers to widespread adoption remain—including challenges in interpreting privacy regulations, educating patients and physicians about the power that PRO collection can provide to patient-centered care.

Case Description: This article describes lessons learned from the California Joint Replacement Registry’s (CJRR) five-year effort to collect PROs from patients undergoing total hip and total knee replacement surgeries. CJRR is a voluntary, multi-institutional registry in California that collects clinical and device information, as well as PROs from patients undergoing total hip arthroplasty (THA) and total knee arthroplasty (TKA) surgeries.

Proposed Solutions: The CJRR encountered and developed solutions to overcome several key issues: (1) limitations of electronic PRO collection, (2) challenges in patient recruitment and tracking, (3) challenges in encouraging patients to complete PRO surveys, (4) real and perceived administrative burden to clinic and hospital staff, (5) surgeon engagement, and (6) survey costs.

Conclusion: The CJRR’s field experience can inform growing numbers of providers and researchers who seek to more fully understand the impact of care from the patient’s perspective. In addition, the authors believe that these challenges can best be addressed through a combination of policy changes and increased incentives.

Use Case

Health Research

Implementation Considerations

Scoring, interpretation and display of results

Resource Types

Publications

Data Collection Tools/Healthcare Settings

The CJRR has a web-based and paper-based PRO collection tool that integrates with the registry. It also accepts/interacts with EHRs if they are collecting PROs. The setting of data collection and use is ambulatory and inpatient settings, as well as patient smart phone, home computer or tablet.

Generalizability to other settings and best practices

CJRR encountered and developed solutions to overcome several key issues that are applicable in any specialty or setting: (1) limitations of electronic PRO collection, (2) challenges in patient recruitment and tracking, (3) challenges in encouraging patients to complete PRO surveys, (4) real and perceived administrative burden to clinic and hospital staff (5) surgeon engagement, and (6) survey costs. CJRR’s field experience can inform growing numbers of providers and researchers who seek to more fully understand the impact of care from the patient’s perspective.

Acknowledgement of Funders

N/A