The Use of Clinical Registries in the United States: A Landscape Survey. Issue 1 (7th December 2017)

• Record Type: Journal Article
• Authors: Blumenthal, Seth
• Is Part Of: EGEMS. Volume 5:Issue 1(2017)
• Publication Date: 2017-12-07
• Subjects: Medical records -- Data processing -- Periodicals; Medical care -- Data processing -- Periodicals; Medical Records; Automatic Data Processing; Medical care -- Data processing; Medical records -- Data processing; Periodicals; Periodicals; 651.504261
• DOI: 10.5334/egems.248
• Languages: English
• ISSNs: 2327-9214

Abstract

Introduction: The use of information from clinical registries for improvement and value-based payment is increasing, yet information about registry use is not widely available. We conducted a landscape survey to understand registry uses, focus areas and challenges. The survey addressed the structure and organization of registry programs, as well as their purpose and scope. Setting: The survey was conducted by the National Quality Registry Network (NQRN), a community of organizations interested in registries. NQRN is a program of the PCPI, a national convener of medical specialty and professional societies and associations, which constitute a majority of registry stewards in the United States. Methods: We surveyed 152 societies and associations, asking about registry programs, governance, number of registries, purpose and data uses, data collection, expenses, funding and interoperability. Results: The response rate was 52 percent. Many registries were self-funded, with 39 percent spending less than $1 million per year, and 32 percent spending $1-9.9 million. The typical registry had three full-time equivalent staff. Registries were frequently used for quality improvement, benchmarking and clinical decision support. 85 percent captured outpatient data. Most registries collected demographics, treatments, practitioner information and comorbidities; 53 percent captured patient-reported outcomes. 88 percent used manual data entry and 18 percent linked to external secondary data sources. Cost, interoperability and vendor management were barriers to continued registry development. Conclusions: Registries captured data across a broad scope, audited data quality using multiple techniques, and used a mix of automated and manual data capture methods. Registry interoperability was still a challenge, even among registries using nationally accepted data standards.