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Knowledge and insights from a maturing international clinical quality registry

Knowledge and insights from a maturing international clinical quality registry
Knowledge and insights from a maturing international clinical quality registry
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.
audit and feedback, collaborative working group, documentation, international clinical quality registry, process evaluation, shared-learning
1067-5027
964-969
Sampurno, Fanny
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Kowalski, Christoph
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Connor, Sarah E
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Nguyen, Anissa V
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Acuña, Àngels Pont
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Ng, Chi-fai
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Foster, Claire
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Feick, Günter
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Boronat, Olatz Garin
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Dieng, Sebastian
557b45a5-00df-49a8-b037-fc94bf45a156
Brglevska, Silvana
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Ferrante, Stephanie
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Leung, Steven
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Villanti, Paul
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Moore, Caroline M
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Graham, Ian D
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Millar, Jeremy L
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Litwin, Mark S
c5be4772-8763-4a1e-b20f-016db1234b78
Papa, Nathan
c137c569-73e8-4599-b91b-cfd558625725
Sampurno, Fanny
acc151e4-2c00-4a8b-8f50-4d1f133d43d8
Kowalski, Christoph
ca280beb-e499-40cf-8794-a50d8a68531d
Connor, Sarah E
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Nguyen, Anissa V
46d4254d-db1a-4b7b-ab43-6765934a366d
Acuña, Àngels Pont
12c69e6b-ee3c-442c-bf25-0f0ce549a1bc
Ng, Chi-fai
530ef807-0d4c-4287-aa81-9255da3f3dff
Foster, Claire
00786ac1-bd47-4aeb-a0e2-40e058695b73
Feick, Günter
0b936f95-a134-4033-b666-0a95aa4c4f9a
Boronat, Olatz Garin
749644f9-ec1e-4179-9e5f-92d183e20dc1
Dieng, Sebastian
557b45a5-00df-49a8-b037-fc94bf45a156
Brglevska, Silvana
425ac727-b3d7-42c7-b694-21a0f8ef6313
Ferrante, Stephanie
aa31e3b3-a2b2-489b-93d6-c7d56da96139
Leung, Steven
580cbb89-dacd-4c41-aa3d-729fc8df2eea
Villanti, Paul
622a6759-06c7-4742-8ef0-2666c46cc79b
Moore, Caroline M
87ccbdc5-40b6-41b5-8639-46f3f04896e9
Graham, Ian D
3728145a-a8e3-4f0b-8bd1-1dd0372a4618
Millar, Jeremy L
da9b82ad-a8b2-4955-bf9f-76210d51b4c8
Litwin, Mark S
c5be4772-8763-4a1e-b20f-016db1234b78
Papa, Nathan
c137c569-73e8-4599-b91b-cfd558625725

Sampurno, Fanny, Kowalski, Christoph, Connor, Sarah E, Nguyen, Anissa V, Acuña, Àngels Pont, Ng, Chi-fai, Foster, Claire, Feick, Günter, Boronat, Olatz Garin, Dieng, Sebastian, Brglevska, Silvana, Ferrante, Stephanie, Leung, Steven, Villanti, Paul, Moore, Caroline M, Graham, Ian D, Millar, Jeremy L, Litwin, Mark S and Papa, Nathan (2022) Knowledge and insights from a maturing international clinical quality registry. Journal of the American Medical Informatics Association, 29 (5), 964-969. (doi:10.1093/jamia/ocab281).

Record type: Article

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.

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Knowledge and insights from a maturing international clinical quality registry - Accepted Manuscript
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Accepted/In Press date: 6 December 2021
Published date: 1 May 2022
Additional Information: Publisher Copyright: © 2022 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.
Keywords: audit and feedback, collaborative working group, documentation, international clinical quality registry, process evaluation, shared-learning

Identifiers

Local EPrints ID: 457610
URI: http://eprints.soton.ac.uk/id/eprint/457610
ISSN: 1067-5027
PURE UUID: 5c20b08f-4b7f-4a14-a7a6-0bf55b6dc34a
ORCID for Claire Foster: ORCID iD orcid.org/0000-0002-4703-8378

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Date deposited: 14 Jun 2022 16:38
Last modified: 17 Mar 2024 07:19

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Contributors

Author: Fanny Sampurno
Author: Christoph Kowalski
Author: Sarah E Connor
Author: Anissa V Nguyen
Author: Àngels Pont Acuña
Author: Chi-fai Ng
Author: Claire Foster ORCID iD
Author: Günter Feick
Author: Olatz Garin Boronat
Author: Sebastian Dieng
Author: Silvana Brglevska
Author: Stephanie Ferrante
Author: Steven Leung
Author: Paul Villanti
Author: Caroline M Moore
Author: Ian D Graham
Author: Jeremy L Millar
Author: Mark S Litwin
Author: Nathan Papa

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