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Open Data Training Video: A proposed data de-identification framework for clinical research Mawji, Alishah; Longstaff, Holly; Trawin, Jessica; Komugisha, Clare; Novakowski, Stefanie K.; Wiens, Matt; Akech, Samuel; Tagoola, Abner; Kissoon, Niranjan; Ansermino, Mark J.

Description

<strong>Objective(s):</strong> Data sharing has enormous potential to accelerate and improve the accuracy of research, strengthen collaborations, and restore trust in the clinical research enterprise. Nevertheless, there remains reluctancy to openly share raw data sets, in part due to concerns regarding research participant confidentiality and privacy. We provide an instructional video to describe a standardized de-identification framework that can be adapted and refined based on specific context and risks.<br /> <br /><strong>Data Description:</strong> Training video, presentation slides.<br /> <br /><strong>Related Resources:</strong> The data de-identification algorithm, dataset, and data dictionary that correspond with this training video are available through the <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi:10.5683/SP3/MSTH98 ">Smart Triage sub-Dataverse.</a>; <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."

Item Metadata

Title
Open Data Training Video: A proposed data de-identification framework for clinical research
Creator
Mawji, Alishah; Longstaff, Holly; Trawin, Jessica; Komugisha, Clare; Novakowski, Stefanie K.; Wiens, Matt; Akech, Samuel; Tagoola, Abner; Kissoon, Niranjan; Ansermino, Mark J.
Contributor
Pallot , Katija
Date Issued
2023-03-15
Description
<strong>Objective(s):</strong> Data sharing has enormous potential to accelerate and improve the accuracy of research, strengthen collaborations, and restore trust in the clinical research enterprise. Nevertheless, there remains reluctancy to openly share raw data sets, in part due to concerns regarding research participant confidentiality and privacy. We provide an instructional video to describe a standardized de-identification framework that can be adapted and refined based on specific context and risks.<br /> <br /><strong>Data Description:</strong> Training video, presentation slides.<br /> <br /><strong>Related Resources:</strong> The data de-identification algorithm, dataset, and data dictionary that correspond with this training video are available through the <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi:10.5683/SP3/MSTH98 ">Smart Triage sub-Dataverse.</a>; <br /><strong>NOTE for restricted files:</strong> If you are not yet a CoLab member, please complete our <a href = "https://rc.bcchr.ca/redcap/surveys/?s=EDCYL7AC79">membership application survey</a> to gain access to restricted files within 2 business days. <br />Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on <a href = "https://www.bcchr.ca/pediatric-sepsis-data-colab">this page</a> under "collaborate with the pediatric sepsis colab."
Subject
Medicine, Health and Life Sciences; Common data elements; Data science; Infection; Pediatric; Infant; Data curation; Data management; Big data; Sepsis; Child; Medical informatics; Algorithms; Data aggregation
Type
Dataset
Language
English
Date Available
2023-03-14
Provider
University of British Columbia Library
License
As indicated under "terms of use", the license for restricted files do not include commercial use of such files and derivative works. Exceptions may be sought from the Pediatric Sepsis CoLab on a case-by-case basis. To access restricted files, please become a CoLab member by completing our membership application survey here . Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on this page under "collaborate with the pediatric sepsis colab."
DOI
10.14288/1.0427432
URI
https://doi.org/10.5683/SP3/7XYZVC
Publisher DOI
https://doi.org/10.5683/SP3/7XYZVC
Aggregated Source Repository
Dataverse

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Licence

As indicated under "terms of use", the license for restricted files do not include commercial use of such files and derivative works. Exceptions may be sought from the Pediatric Sepsis CoLab on a case-by-case basis. To access restricted files, please become a CoLab member by completing our membership application survey here . Some files may remain restricted to CoLab members. These files are deemed more sensitive by the file owner and are meant to be shared on a case-by-case basis. Please contact the CoLab coordinator on this page under "collaborate with the pediatric sepsis colab."