title: Collecting Patient-Reported Outcomes: Lessons from the California Joint Replacement Registry.
abstract: BACKGROUND
  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.
  
  
  METHODS
  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.
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Chenok Associates.
authors.forename: Kate
authors.initials: K
authors.lastname: Chenok
authors.affiliation: California HealthCare Foundation.
authors.forename: Stephanie
authors.initials: S
authors.lastname: Teleki
authors.affiliation: UCLA Department of Orthopaedic Surgery.
authors.forename: Nelson F
authors.initials: NF
authors.lastname: SooHoo
authors.affiliation: Stanford University.
authors.forename: James
authors.initials: J
authors.lastname: Huddleston
authors.affiliation: University of Texas at Austin.
authors.forename: Kevin J
authors.initials: KJ
authors.lastname: Bozic
keywords: Data Collection; Electronic Health Records; Organizational Innovation; Patient Centered Care; Policy Changes; Registry