Dataset Information

The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

ABSTRACT: Public reporting of health care data continues to proliferate as consumers and other stakeholders seek information on the quality and outcomes of care. Medicare's Hospital Compare website, the U.S. News & World Report hospital rankings, and several state-level programs are well known. Many rely heavily on administrative data as a surrogate to reflect clinical reality. Clinical data are traditionally more difficult and costly to collect, but more accurately reflect patients' clinical status, thus enhancing the validity of quality metrics. We describe the public reporting effort being launched by the American College of Cardiology and partnering professional organizations using clinical data from the National Cardiovascular Data Registry (NCDR) programs. This hospital-level voluntary effort will initially report process of care measures from the percutaneous coronary intervention (CathPCI) and implantable cardioverter-defibrillator (ICD) registries of the NCDR. Over time, additional process, outcomes, and composite performance metrics will be reported.

SUBMITTER: Dehmer GJ

PROVIDER: S-EPMC5646668 | biostudies-literature | 2016 Jan

REPOSITORIES: biostudies-literature

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The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

Dehmer Gregory J GJ Jennings Jonathan J Madden Ruth A RA Malenka David J DJ Masoudi Frederick A FA McKay Charles R CR Ness Debra L DL Rao Sunil V SV Resnic Frederic S FS Ring Michael E ME Rumsfeld John S JS Shelton Marc E ME Simanowith Michael C MC Slattery Lara E LE Weintraub William S WS Lovett Ann A Normand Sharon-Lise SL

Journal of the American College of Cardiology 20151118 2

Public reporting of health care data continues to proliferate as consumers and other stakeholders seek information on the quality and outcomes of care. Medicare's Hospital Compare website, the U.S. News & World Report hospital rankings, and several state-level programs are well known. Many rely heavily on administrative data as a surrogate to reflect clinical reality. Clinical data are traditionally more difficult and costly to collect, but more accurately reflect patients' clinical status, thus ...[more]

PMID: 26603176

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Project description:BackgroundLeft atrial appendage occlusion (LAAO) to prevent stroke in patients with atrial fibrillation has been evaluated in 2 randomized trials; post-approval clinical data are limited.ObjectivesThe purpose of this study was to describe the National Cardiovascular Data Registry (NCDR) LAAO Registry and present patient, hospital, and physician characteristics and in-hospital adverse event rates for Watchman procedures in the United States during its first 3 years.MethodsThe authors describe the LAAO Registry structure and governance, the outcome adjudication processes, and the data quality and collection processes. They characterize the patient population, performing hospitals, and in-hospital adverse event rates.ResultsA total of 38,158 procedures from 495 hospitals performed by 1,318 physicians in the United States were included between January 2016 and December 2018. The mean patient age was 76.1 ± 8.1 years, the mean CHA2DS2-VASc (congestive heart failure, hypertension, 65 years of age and older, diabetes mellitus, previous stroke or transient ischemic attack, vascular disease, 65 to 74 years of age, female) score was 4.6 ± 1.5, and the mean HAS-BLED (hypertension, abnormal renal/liver function, stroke, bleeding history or predisposition, labile international normalized ratio, elderly, drugs/alcohol concomitantly) score was 3.0 ± 1.1. The median annual number of LAAO procedures performed for hospitals was 30 (interquartile range: 18 to 44) and for physicians was 12 (interquartile range: 8 to 20). Procedures were canceled or aborted in 7% of cases; among cases in which a device was deployed, 98.1% were implanted with <5-mm leak. Major in-hospital adverse events occurred in 2.16% of patients; the most common complications were pericardial effusion requiring intervention (1.39%) and major bleeding (1.25%), whereas stroke (0.17%) and death (0.19%) were rare.ConclusionsThe LAAO Registry has enrolled >38,000 patients implanted with the device. Patients were generally older with more comorbidities than those enrolled in the pivotal trials; however, major in-hospital adverse event rates were lower than reported in those trials.

Project description:BackgroundIn response to a growing movement to involve patients and community stakeholders in health research, we established a parent advisory group in 2016. The group meets regularly to act as advisors and partners for our research program. The purpose of this paper is to describe our experiences establishing the group, and results from parent evaluations.MethodsWe contacted 191 organizations to recruit parents and caregivers of children who wanted to contribute to child health research. Our initial goal was to recruit 8 to 10 parents who would meet regularly (approximately 8 times per year). We conducted an online baseline survey of members after the first two meetings to understand motivations for participating and early experiences. Sixteen months later we conducted another online survey to identify what was going well and areas for improvement.ResultsTwelve parents initially joined the group. The baseline survey (n = 9 complete) identified motivations for participation: wanting a patient/family voice in health research; personal experience accessing health system for child's care; wanting to improve healthcare communications. Concerns about participation included: having sufficient time to attend meetings; whether contributions would be worthwhile; and uncertainty about how the group's input would be used in practice. Parents identified aspects that were working well: opportunity to provide constructive feedback; diversity among parents involved; well-run and organized meetings (agenda and materials sent prior to meeting, skilled facilitation, adequate time for discussion). Items parents identified as not working well were: fluctuating attendance; not knowing others in the group; challenges if attending remotely. At follow-up, there were seven active members. The follow-up survey (n = 5 complete) identified positive feedback related to group dynamics (e.g., collegial, everyone participates) and organization of meetings. Suggestions for improvement included increasing membership, regular attendance, and providing adequate information/context to allow meaningful input.ConclusionsOur experience establishing a parent advisory group and evaluation of the group by parent members have yielded tremendous insights around involving parents and patient proxies in health research. The parent advisory group is a dynamic entity requiring ongoing communication between researchers and members. Effective means of evaluating engagement is essential to ensure it is meaningful. Dedicated time, funding and resources are required for success.

Dataset Information

The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

Publications

The National Cardiovascular Data Registry Voluntary Public Reporting Program: An Interim Report From the NCDR Public Reporting Advisory Group.

Similar Datasets

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