{"title":"The Use of Clinical Registries in the United States: A Landscape Survey.","authors":"Seth Blumenthal","doi":"10.5334/egems.248","DOIUrl":null,"url":null,"abstract":"<p><strong>Introduction: </strong>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.</p><p><strong>Setting: </strong>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.</p><p><strong>Methods: </strong>We surveyed 152 societies and associations, asking about registry programs, governance, number of registries, purpose and data uses, data collection, expenses, funding and interoperability.</p><p><strong>Results: </strong>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.</p><p><strong>Conclusions: </strong>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.</p>","PeriodicalId":72880,"journal":{"name":"EGEMS (Washington, DC)","volume":"5 1","pages":"26"},"PeriodicalIF":0.0000,"publicationDate":"2017-12-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://ftp.ncbi.nlm.nih.gov/pub/pmc/oa_pdf/10/ca/egems-5-1-248.PMC5994955.pdf","citationCount":"21","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"EGEMS (Washington, DC)","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.5334/egems.248","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"","JCRName":"","Score":null,"Total":0}
引用次数: 21
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.