Leveraging Effective Clinical Registries to Advance Medical Care Quality and Transparency

Klaiman, Tamar; Pracilio, Valerie; Kimberly, Laura L.; Cecil, Kate S.; Legnini, Mark W.

doi:10.1089/pop.2013.0021

Cited by 21 publications

(28 citation statements)

References 7 publications

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“…Table summarizes the main observations of current policies and conditions for QI registries in the USA. The promotion of value‐based purchasing by the Patient Protection and Affordable Care Act has stimulated the participation of providers in registry programmes as a way to offer comparative performance data to payers and purchasers . Some recent US developments actually mirror Swedish registry policies.…”

Section: Resultsmentioning

confidence: 99%

“…Still, establishing national registries in such a large country is challenging, and registries have typically been confined to a particular geographical location, organization or self‐selected group of organizations . Whilst registries have not been a major part of national quality strategies, there is a surge of interest in nationwide QI registries , and they are favoured by some recent federal policies .…”

Section: Introductionmentioning

confidence: 99%

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Policies to foster quality improvement registries: lessons from the Swedish case

Levay

2015

J Intern Med

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Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Policies to foster quality improvement registries: lessons from the Swedish case

Levay

2015

J Intern Med

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“…Registries continued to be used for a variety of purposes and were capturing and measuring the kinds of data and information needed to power a value-based, learning health care delivery system. Given the national emphasis on measuring patient health outcomes, registries responded by developing measures and data collection methods that make implementing these measures feasible [ 14 30 31 ]. Registries provide timely, actionable and specific feedback to participating clinicians, enabling them to understand their performance relative to their peers, both locally and nationally.…”

Section: Discussionmentioning

confidence: 99%

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

Blumenthal¹

2017

eGEMs

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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.

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“…In 2008 Drolet et al published a classification system for registries that identified five characteristics of a registry, using the term in its broadest sense: mergeable, standardized longitudinal data from multiple users, including outcomes, collected using a rules-based approach [20]. Klaiman et al examined registry use in 2013 and found that “effective registries were successful in 1 or more of 6 key areas: data standardization, transparency, accuracy/completeness of data, participation by providers, financial sustainability, and/or providing feedback to providers [21]. ” The Australian Commission on Safety and Quality in Health Care has published a framework for quality registries that describes desired registry attributes across domains including data collection, risk adjustment, data security, data quality, governance, ethics & privacy, reporting and funding [22].…”

Section: Prior Work On Clinical Registry Evaluationmentioning

confidence: 99%

The NQRN Registry Maturational Framework: Evaluating the Capability and Use of Clinical Registries

Blumenthal

2019

eGEMs

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Clinical registries are increasingly used as national performance measurement platforms. In 2018, nearly 70 percent of the more than 50 specialty society registries in the United States were used by the Centers for Medicare & Medicaid Services (CMS) to measure the quality of clinical care. Private payers and evaluating organizations also use or desire to use registry information to inform quality improvement programs and value-based payment models. The requirements for an entity to become a CMS Qualified Clinical Data Registry (QCDR) constitute a minimum set of standards for the purpose of reporting to the CMS Quality Payment Program. Models and frameworks exist that can help classify registries by purpose and use, and maturity models are available for evaluating health IT systems generally. However, there is currently no framework that describes the capability that should be expected from a registry at different phases of its development and maturity. In response, the National Quality Registry Network (NQRN) has developed a registry maturational framework. The framework models early, intermediate and mature development phases, the capabilities anticipated during these phases and 17 domains across which registry programs support those capabilities. The framework was developed and refined by NQRN registry stewards, users and other stakeholders between 2013–2018. It is intended to be used as a developmental guide or for registry evaluation. The successful use of registry information to execute value-based payment models is a critical need in U.S. health care. The NQRN framework can help ensure that our national system of registries is rising to the occasion.

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Leveraging Effective Clinical Registries to Advance Medical Care Quality and Transparency

Cited by 21 publications

References 7 publications

Policies to foster quality improvement registries: lessons from the Swedish case

Policies to foster quality improvement registries: lessons from the Swedish case

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

The NQRN Registry Maturational Framework: Evaluating the Capability and Use of Clinical Registries

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