Literature DB >> 35048976

Knowledge and insights from a maturing international clinical quality registry.

Fanny Sampurno1, Christoph Kowalski2, Sarah E Connor3, Anissa V Nguyen3, Àngels Pont Acuña4, Chi-Fai Ng5, Claire Foster6, Günter Feick7, Olatz Garin Boronat4, Sebastian Dieng8, Silvana Brglevska9, Stephanie Ferrante10, Steven Leung5, Paul Villanti9, Caroline M Moore11, Ian D Graham12, Jeremy L Millar1, Mark S Litwin13, Nathan Papa1.   

Abstract

Since 2017, the TrueNTH Global Registry (TNGR) has aimed to drive improvement in patient outcomes for individuals with localized prostate cancer by collating data from healthcare institutions across 13 countries. As TNGR matures, a systematic evaluation of existing processes and documents is necessary to evaluate whether the registry is operating as intended. The main supporting documents: protocol and data dictionary, were comprehensively reviewed in a series of meetings over a 10-month period by an international working group. In parallel, individual consultations with local institutions regarding a benchmarking quality-of-care report were conducted. Four consensus areas for improvement emerged: updating operational definitions, appraisal of the recruitment process, refinement of data elements, and improvement of data quality and reporting. Recommendations presented were drawn from our collective experience and accumulated knowledge in operating an international registry. These can be readily generalized to other health-related reporting programs beyond clinical registries.
© The Author(s) 2022. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com.

Entities:  

Keywords:  audit and feedback; collaborative working group; documentation; international clinical quality registry; process evaluation; shared-learning

Mesh:

Year:  2022        PMID: 35048976      PMCID: PMC9006702          DOI: 10.1093/jamia/ocab281

Source DB:  PubMed          Journal:  J Am Med Inform Assoc        ISSN: 1067-5027            Impact factor:   4.497


  16 in total

1.  How can I deal with missing data in my study?

Authors:  D A Bennett
Journal:  Aust N Z J Public Health       Date:  2001-10       Impact factor: 2.939

Review 2.  Clinical registries and quality measurement in surgery: a systematic review.

Authors:  Anne M Stey; Marcia M Russell; Clifford Y Ko; Greg D Sacks; Aaron J Dawes; Melinda M Gibbons
Journal:  Surgery       Date:  2015-02       Impact factor: 3.982

3.  Clinical quality registries have the potential to drive improvements in the appropriateness of care.

Authors:  Nick Wilcox; John J McNeil
Journal:  Med J Aust       Date:  2016-11-21       Impact factor: 7.738

4.  Risks of using medical record and administrative data for prognostic models.

Authors:  Marliese Alexander; Sue M Evans; Rory Wolfe; David L Ball; Kate Burbury
Journal:  Med J Aust       Date:  2017-08-07       Impact factor: 7.738

5.  Evaluation of Multicenter Registry Data.

Authors:  Sebastian P Schraven; Robert Mlynski
Journal:  Laryngorhinootologie       Date:  2019-04-03       Impact factor: 1.057

6.  pT0 Prostate Cancer: Predictive Clinicopathologic Features in an American Population.

Authors:  Matthew J Bream; Laila Dahmoush; James A Brown
Journal:  Curr Urol       Date:  2013-07-28

Review 7.  On the importance of race, socioeconomic status and comorbidity when evaluating quality of life in men with prostate cancer.

Authors:  Scott D Ramsey; Steven B Zeliadt; Ingrid J Hall; Donatus U Ekwueme; David F Penson
Journal:  J Urol       Date:  2007-06       Impact factor: 7.450

8.  Quality Indicators for Global Benchmarking of Localized Prostate Cancer Management.

Authors:  Fanny Sampurno; Jia Zheng; Lydia Di Stefano; Jeremy L Millar; Claire Foster; Ferran Fuedea; Celestia Higano; Hartwig Hulan; Stephen Mark; Caroline Moore; Alison Richardson; Frank Sullivan; Neil S Wenger; Daniela Wittmann; Sue Evans
Journal:  J Urol       Date:  2018-03-01       Impact factor: 7.450

9.  Establishing a global quality of care benchmark report.

Authors:  Fanny Sampurno; Justin Cally; Jacinta L Opie; Ashwini Kannan; Jeremy L Millar; Antonio Finelli; Andrew J Vickers; Caroline M Moore; Christoph Kowalski; Claire Foster; Dan A Barocas; David Galvin; Jean-Paul Van Basten; John L Gore; Julia Ferencz; Keith A Lawson; Khurshid R Ghani; Lorna Kwan; Olli Saarela; Sarah E Connor; Sebastian Dieng; Susan Linsell; Timo Fw Soeterik; Paul Villanti; Mark S Litwin; Sue M Evans
Journal:  Health Informatics J       Date:  2021 Apr-Jun       Impact factor: 2.934

Review 10.  Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review.

Authors:  Raphaël Chevrier; Vasiliki Foufi; Christophe Gaudet-Blavignac; Arnaud Robert; Christian Lovis
Journal:  J Med Internet Res       Date:  2019-05-31       Impact factor: 5.428

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