Start Submission Become a Reviewer

Reading: The Use of Clinical Registries in the United States: A Landscape Survey

Download

A- A+
dyslexia friendly

Empirical research

The Use of Clinical Registries in the United States: A Landscape Survey

Author:

Seth Blumenthal

PCPI Foundation
About Seth
MBA
X close

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.

How to Cite: Blumenthal S. The Use of Clinical Registries in the United States: A Landscape Survey. eGEMs (Generating Evidence & Methods to improve patient outcomes). 2017;5(1):26. DOI: http://doi.org/10.5334/egems.248
218
Views
138
Downloads
2
Twitter
Published on 07 Dec 2017.
Peer Reviewed

Downloads

  • PDF (EN)