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Borealis
Murthy, Srinvivas; Kinshella, Maggie Woo; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Dhugga, Gurm; Ansermino, J Mark 2023-04-18 <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." <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, clinical researchers struggle to find real-world examples of Open Data sharing. <br /> <br />The aim of this 1 hr virtual workshop is to provide real-world examples of Open Data sharing for both qualitative and quantitative data. <br /> <br />Specifically, participants will learn:<br /> 1. Primary challenges and successes when sharing quantitative and qualitative clinical research data. <br /> <br />2. Platforms available for open data sharing.<br /> <br />3. Ways to troubleshoot data sharing and publish from open data.<br /> <br />Workshop Agenda:<br /> <br />1. “Data sharing during the COVID-19 pandemic” - Speaker: Srinivas Murthy, Clinical Associate Professor, Department of Pediatrics, Faculty of Medicine, University of British Columbia. Investigator, BC Children's Hospital <br /> <br />2. “Our experience with Open Data for the 'Integrating a neonatal healthcare package for Malawi' project.” - Speaker: Maggie Woo Kinshella, Global Health Research Coordinator, Department of Obstetrics and Gynaecology, BC Children’s and Women’s Hospital and University of British Columbia <br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Srinivas Murthy: Data sharing during the COVID-19 pandemic presentation and accompanying PowerPoint slides.<br /> <br />Maggie Woo Kinshella: Our experience with Open Data for the 'Integrating a neonatal healthcare package for Malawi' project presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</a>.<br />
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Borealis
Huxford, Charly; Nguyen, Vuong; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Murthy, Srinivas; Dhugga, Gurm; Kinshella, Maggie Woo; Ansermino, J Mark 2023-04-18 <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, this introduces many challenges, especially when managing confidential clinical data.<br /> <br />The aim of this 1 hr virtual workshop is to provide participants with knowledge about what synthetic data is, methods to create synthetic data, and the 2023 Pediatric Sepsis Data Challenge.<br /> <br />Workshop Agenda:<br /> <br />1. Introduction - Speaker: Mark Ansermino, Director, Centre for International Child Health <br /> <br />2. "Leveraging Synthetic Data for an International Data Challenge" - Speaker: Charly Huxford, Research Assistant, Centre for International Child Health <br /> <br />3. "Methods in Synthetic Data Generation." - Speaker: Vuong Nguyen, Biostatistician, Centre for International Child Health and The HIPpy Lab <br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Charly Huxford: Leveraging Synthetic Data for an International Data Challenge presentation and accompanying PowerPoint slides.<br /> <br />Vuong Nguyen: Methods in Synthetic Data Generation presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</a>.<br /> <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."
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Borealis
Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Symonds, Nicola; Knappett, Martina; Krepiakevich, Alexia; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark 2020-04-17 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. <br /> <br /><strong><u>Tools Description:</strong></u> <br /><strong>Step 1 Environmental Scan</strong> - A health facility survey that gathers information regarding (1) the availability of resources and services in the health facility and (2) the readiness of the health facility to provide specific services to a defined minimum standard. <br /><strong>Step 2 Technology Readiness Scan</strong> - A short survey that aims to assess a facility’s level of technological preparedness for facilitating standard triage and discharge processes. Ultimately, it determines what technology is needed in order to effectively implement quality improvement intervention. <br /><strong>Step 3a-f Observational Scan</strong> - Assesses the quality and safety of care through observation of a health worker in suspected cases of pneumonia, diarrhea, and malaria, in order to assess adherence to standards in the patient care process. <br /><strong>Step 4 Caretaker Satisfaction Questionnaire</strong> - Assesses the patient-caretakers’ perspective of the quality of care they/their child received while at the facility. <br /><strong>Step 5 Health Worker Satisfaction Questionnaire</strong> - Assesses health workers’ perspectives of the quality of care provided at the facility. <br /><strong>Environmental Scan Feedback Survey</strong> - To be completed by data collector(s) and asks questions pertaining to the Scan’s relevancy and usability. The intention of this form is to collect suggestions on what elements of the Scan to add, eliminate, or modify to inform future module updates. <br /><strong>Written Report Of Results Feedback Survey</strong> - This survey asks questions pertaining to the presentation and value of the results report. <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."
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Borealis
Komugisha, Clare; Trawin, Jessica; Mwaka, Savio; Kajumba Nsangi, Damalie; Kanyali, Charlene; DeKorne, Micah; Kenya-Mugisha, Nathan; Wiens, Matthew 2022-06-02 <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." <strong>Objective(s):</strong> Smart Discharges is a digital health program that uses individual-level risk prediction and intervention to increase effective health seeking behavior, improve health outcomes, and reduce mortality during the post-discharge period. Health workers aim to mitigate risk by educating caregivers on post-discharge care practices and by scheduling follow-up visits for at-risk children in their communities. <br /> <br /><strong>Data Description:</strong> This dataset features a 7-part caregiver counselling video series tailored to the Ugandan context. It includes an introductory video and seven videos focusing on essential post-discharge care practices: <br /> <br />1) Hygiene<br /> 2) Nutrition<br /> 3) Breastfeeding<br /> 4) Care Seeking<br /> 5) Mosquito Net Use<br /> 6) Medications<br /> 7) Immunizations<br /> <br />Videos are available in English and local Ugandan languages of Acholi, Luganda, Lusoga, and Runyankole. This dataset contains the <strong> English</strong> version. <br /> <br /><strong>Limitations:</strong> Videos were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Abbreviations:</strong> Village Health Teams (VHT) (i.e. local term for Community Health Worker (CHW))<br /> <br /><strong>Ethics Declaration:</strong> NA<br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Thrasher Research Fund;<br />
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Borealis
Komugisha, Clare; Trawin, Jessica; Mwaka, Savio; Kajumba Nsangi, Damalie; Kanyali, Charlene; DeKorne, Micah; Kenya-Mugisha, Nathan; Wiens, Matthew 2022-06-02 <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." <strong>Objective(s):</strong> Smart Discharges is a digital health program that uses individual-level risk prediction and intervention to increase effective health seeking behavior, improve health outcomes, and reduce mortality during the post-discharge period. Health workers aim to mitigate risk by educating caregivers on post-discharge care practices and by scheduling follow-up visits for at-risk children in their communities. <br /> <br /><strong>Data Description:</strong> This dataset features a 7-part caregiver counselling video series tailored to the Ugandan context. It includes an introductory video and seven videos focusing on essential post-discharge care practices: <br /> <br />1) Hygiene<br /> 2) Nutrition<br /> 3) Breastfeeding<br /> 4) Care Seeking<br /> 5) Mosquito Net Use<br /> 6) Medications<br /> 7) Immunizations<br /> <br />Videos are available in English and local Ugandan languages of Acholi, Luganda, Lusoga, and Runyankole. This dataset contains the <strong> Runyankole</strong> version. <br /> <br /><strong>Limitations:</strong> Videos were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Abbreviations:</strong> Village Health Teams (VHT) (i.e. local term for Community Health Worker (CHW))<br /> <br /><strong>Ethics Declaration:</strong> NA<br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Thrasher Research Fund;
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Borealis
Komugisha, Clare; Trawin, Jessica; Mwaka, Savio; Kajumba Nsangi, Damalie; Kanyali, Charlene; DeKorne, Micah; Kenya-Mugisha, Nathan; Wiens, Matthew 2022-06-02 <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." <strong>Objective(s):</strong> Smart Discharges is a digital health program that uses individual-level risk prediction and intervention to increase effective health seeking behavior, improve health outcomes, and reduce mortality during the post-discharge period. Health workers aim to mitigate risk by educating caregivers on post-discharge care practices and by scheduling follow-up visits for at-risk children in their communities. <br /> <br /><strong>Data Description:</strong> This dataset features a 7-part caregiver counselling video series tailored to the Ugandan context. It includes an introductory video and seven videos focusing on essential post-discharge care practices: <br /> <br />1) Hygiene<br /> 2) Nutrition<br /> 3) Breastfeeding<br /> 4) Care Seeking<br /> 5) Mosquito Net Use<br /> 6) Medications<br /> 7) Immunizations<br /> <br />Videos are available in English and local Ugandan languages of Acholi, Luganda, Lusoga, and Runyankole. This dataset contains the <strong> Luganda</strong> version. <br /> <br /><strong>Limitations:</strong> Videos were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Abbreviations:</strong> Village Health Teams (VHT) (i.e. local term for Community Health Worker (CHW))<br /> <br /><strong>Ethics Declaration:</strong> NA<br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Thrasher Research Fund;
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Borealis
Mawji, Alishah; Longstaff, Holly; Trawin, Jessica; Komugisha, Clare; Novakowski, Stefanie K.; Wiens, Matt; Akech, Samuel; Tagoola, Abner; Kissoon, Niranjan; Ansermino, Mark J. 2023-03-15 <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."
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Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Krepiakevich, Alexia; Symonds, Nicola; Knappett, Martina; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark 2021-06-24 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. This dataset contains training materials for project setup and data collection. <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."
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Borealis
Kissoon, Niranjan; Fung, Jollee; Hwang, Bella; Trawin, Jessica; Symonds, Nicola; Knappett, Martina; Krepiakevich, Alexia; Liu, Christine; Businge, Stephen; Jabornisky, Roberto; Suiyven, Dzelamunyuy; Talla, Emmanuela; Nwankwor, Odiraa; Tagoola, Abner; Oguonu, Tagbo; Karlovich, Gabrielle; Kenechi, Onah Stanley; Dunsmuir, Dustin; Wiens, Matthew; Ansermino, J Mark 2021-08-03 The purpose of this environmental scan is to support health facilities in identifying and assessing quality improvement (QI) priorities and initiatives to treat children with sepsis. This dataset contains generic protocol and templates, written consent form templates, and verbal consent scripts to assist project teams in the ethics application process. <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."
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Borealis
Komugisha, Clare; Trawin, Jessica; Mwaka, Savio; Kajumba Nsangi, Damalie; Kanyali, Charlene; DeKorne, Micah; Kenya-Mugisha, Nathan; Wiens, Matthew 2022-06-02 <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." <strong>Objective(s):</strong> Smart Discharges is a digital health program that uses individual-level risk prediction and intervention to increase effective health seeking behavior, improve health outcomes, and reduce mortality during the post-discharge period. Health workers aim to mitigate risk by educating caregivers on post-discharge care practices and by scheduling follow-up visits for at-risk children in their communities. <br /> <br /><strong>Data Description:</strong> This dataset features a 7-part caregiver counselling video series tailored to the Ugandan context. It includes an introductory video and seven videos focusing on essential post-discharge care practices: <br /> <br />1) Hygiene<br /> 2) Nutrition<br /> 3) Breastfeeding<br /> 4) Care Seeking<br /> 5) Mosquito Net Use<br /> 6) Medications<br /> 7) Immunizations<br /> <br />Videos are available in English and local Ugandan languages of Acholi, Luganda, Lusoga, and Runyankole. This dataset contains the <strong> Lusoga</strong> version. <br /> <br /><strong>Limitations:</strong> Videos were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Abbreviations:</strong> Village Health Teams (VHT) (i.e. local term for Community Health Worker (CHW))<br /> <br /><strong>Ethics Declaration:</strong> NA<br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Thrasher Research Fund;
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Kuhn, Sarah; Song, Andrew; Novakowski, Stefanie; Johnson, Teresa; Dunsmuir, Dustin; Knappett, Martina; Trawin, Jessica; Ansermino, J Mark 2021-10-28 <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." Video tutorials on open data and how to navigate and use the Sepsis CoLab's Dataverse.
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Borealis
Barsky, Eugene; Schichter, Brittney; Trawin, Jessica; Johnson, Teresa; Kissoon, Niranjan; Wiens, Matthew; Ogilvie, Gina; Murthy, Srinivas; Dhugga, Gurm; Kinshella, Maggie Woo; Ansermino, J Mark 2023-03-10 <strong>Objective(s):</strong> Momentum for open access to research is growing. Funding agencies and publishers are increasingly requiring researchers make their data and research outputs open and publicly available. However, this introduces many challenges, especially when managing potentially sensitive clinical data.<br /> <br />The aim of this 1 hr virtual workshop is to provide participants with foundational knowledge that supports planning for open data in future research projects.<br /> <br />Specifically, participants will:<br /> 1. Gain an understanding of the new Tri-Agency Research Data Management policy and the analogous progress of the University of British Columbia's (UBC) Research Data Management (RDM) strategy and how they can be applied.<br /> <br />2. Gain an understanding of the ethical, privacy, and legal considerations of sharing data.<br /> <br />3. Learn practical skills for incorporating open data language into REB applications and consent form.<br /> <br />Workshop Agenda:<br /> <br />1. "Becoming familiar with the new Tri-Agency Research Data Management Policy" - Speaker: Eugene Barsky, Research Data Librarian, UBC Library<br /> <br />2. "Ethics and Practical Considerations of Open Data Sharing." - Speaker: Brittney Schichter, Director, Research Integration & Innovation, Provincial Health Service Authority (PHSA) Research and Academic Services<br /> <br />This workshop draws on work supported by the Digital Research Alliance of Canada.<br /> <br /><strong>Data Description:</strong> Presentation slides, Workshop Video, and Workshop Communication<br /> <br />Eugene Barksy: Tri-Agency Research Data Management Policy presentation and accompanying PowerPoint slides.<br /> <br />Brittney Schichter: Ethics and Practical Considerations of Open Data Sharing presentation and accompanying Powerpoint slides.<br /> <br />This workshop was developed as part of Dr. Ansermino's Data Champions Pilot Project supported by the <a href = "https://alliancecan.ca/en">Digital Research Alliance of Canada</a>.<br /> <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."
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Borealis
Komugisha, Clare; Trawin, Jessica; Mwaka, Savio; Kajumba Nsangi, Damalie; Kanyali, Charlene; DeKorne, Micah; Kenya-Mugisha, Nathan; Wiens, Matthew 2022-06-02 <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." <strong>Objective(s):</strong> Smart Discharges is a digital health program that uses individual-level risk prediction and intervention to increase effective health seeking behavior, improve health outcomes, and reduce mortality during the post-discharge period. Health workers aim to mitigate risk by educating caregivers on post-discharge care practices and by scheduling follow-up visits for at-risk children in their communities. <br /> <br /><strong>Data Description:</strong> This dataset features a 7-part caregiver counselling video series tailored to the Ugandan context. It includes an introductory video and seven videos focusing on essential post-discharge care practices: <br /> <br />1) Hygiene<br /> 2) Nutrition<br /> 3) Breastfeeding<br /> 4) Care Seeking<br /> 5) Mosquito Net Use<br /> 6) Medications<br /> 7) Immunizations<br /> <br />Videos are available in English and local Ugandan languages of Acholi, Luganda, Lusoga, and Runyankole. This dataset contains the <strong> Acholi</strong> version. <br /> <br /><strong>Limitations:</strong> Videos were designed for the Ugandan context and may not be generalizable to other settings. <br /> <br /><strong>Abbreviations:</strong> Village Health Teams (VHT) (i.e. local term for Community Health Worker (CHW))<br /> <br /><strong>Ethics Declaration:</strong> NA<br /> <br /><strong>Funding Source(s):</strong> BC Children's Hospital Foundation; Grand Challenges Canada; Mining4Life; Thrasher Research Fund;
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Umuhoza, Christian; Zhang, Cherri; Hooft, Anneka; Trawin, Jessica; Uwiragiye, Emmanuel; Mfuranziza, Cynthia Grace; Nguyen, Vuong; Lewis, Peter; Kornblith, Aaron E; Kenya-Mughisha, Nathan; Wiens, Matthew O 2024-04-18 <br/><strong>Background:</strong>In Sub-Saharan Africa, pediatric post-discharge death is increasingly recognized as an important contributor to mortality. To address morbidity and mortality during this period, it is critical to generate a representative evidence base throughout sub-Saharan Africa to inform resource prioritization, as well as policy and guideline development. To date, no studies have been conducted in Rwanda, limiting the understanding of the epidemiology of post-discharge mortality in this region. This study aims to describe the epidemiology of post-discharge mortality in a group of children admitted for suspected sepsis in Rwanda.<br /> <br /><strong>Methods:</strong> We prospectively recruited children aged 0-60 months admitted for suspected sepsis at two sites in Rwanda: Ruhengeri Referral Hospital in Musanze, Rwanda (rural) and University Hospital of Kigali in Kigali, Rwanda (urban) from May 2022 - February 2023. Clinical, laboratory and social variables were collected at admission. Following discharge, participants were followed up to 6 months to determine vital status and health-seeking. We analyzed data in two age-specific cohorts, defined a priori: 0-6m and 6-60m. Multivariate logistic regression was used to identify risk factors. Age-stratified Kaplan-Meier curves were used to estimate the cumulative hazard of 6-month post-discharge mortality.<br /> <br /><strong>Findings:</strong>Of 1218 children enrolled, 115 died (11%): 50% in-hospital (n=57) and 50% after discharge (n=58). Post-discharge mortality was higher in 0-6m cohort (n=28/274, 10%) than in those 6-60m (30/850, 4%), and in Kigali (n=37/413, 9%) vs Ruhengeri (n=21/805, 3%). Median time to post-discharge death was ~1 month (38d in 0-6m; 33d in 6-60m). In both cohorts, increased odds of post-discharge death were associated with weight-for-age z-score <-3 (OR=3.16 (1.26-7.93), 0-6m; OR=7.44 (2.93-18.89), 6-60m) while higher maternal education was protective (OR=0.15 (0.03-0.85), 0-6m; OR=0.09 (0.02-0.75), 6-60m). Abnormal coma scale (OR=3.29 (1.47-7.38)), travel time of >2h (OR=4.63 (1.40-15.22)) and being referred for higher level of care (OR=4.09 (1.04-16.12)) were significant in 6-60 months. Younger children were at highest risk of cumulative mortality.<br /> <br /><strong>Ethics Declaration:</strong> Ethical approval was obtained from the University of Rwanda College of Medicine and Health Sciences (No 411/CMHS IRB/2021); University Teaching Hospital of Kigali (EC/CHUK/005/2022), University of California San Francisco (381688) and the University of British Columbia (H21-02795).<br />
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Kabajaasi, Olive; Trawin, Jessica; Derksen, Brooklyn; Komugisha, Clare; Mwaka, Savio; Waiswa, Peter; Nsungwa-Sabiiti, Jesca; Ansermino, J Mark; Kissoon, Niranjan; Duby, Jessica; Kenya-Mugisha, Nathan; Wiens, Matthew O 2023-06-29 <br /><strong>Background:</strong> The World Health Organization (WHO) Integrated Management of Childhood Illness (IMCI) guidelines recognize the importance of discharge planning to ensure continuation of care at home and appropriate follow-up. However, insufficient attention has been paid to post discharge planning in many hospitals contributing to poor implementation. To understand the reasons for suboptimal discharge, we evaluated the pediatric discharge process from hospital admission through the transition to care within the community in Ugandan hospitals. <br /> <br /><strong>Methods:</strong> This mixed methods prospective study enrolled 92 study participants in three phases: patient journey mapping for 32 admitted children under-5 years of age with suspected or proven infection, discharge process mapping with 24 pediatric healthcare workers, and focus group discussions (FDGs) with 36 primary caregivers and fathers of discharged children. Data were descriptively and thematically analyzed.<br /> <br /><strong>Findings:</strong> The typical discharge process is often not centered around the needs of the child and family. Discharge planning often does not begin until immediately prior to discharge and generally does not include caregiver input. Discharge education and counselling are generally limited, rarely involves the father, and does not focus significantly on post-discharge care or follow-up. Delays in the discharge process itself occur at multiple points, including while awaiting a physical discharge order and then following a discharge order, mainly with billing or transportation issues.<br /> <br /><strong>Data Collection Methods:</strong> <strong>Journey mapping</strong> data were collected using the REDCap Mobile App and were then uploaded to a REDCap database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). Study nurses conducted direct observation during in-hospital care as well as caregiver interviews at admission and 72 hours post-discharge using a series of checklists and close-ended questions with some open-entry questions to identify process outcomes as well as barriers and facilitators to the patient’s journey. Healthcare provider working groups engaged in two brainstorming sessions per hospital to develop a <strong>process map</strong> of each hospital’s current pediatric discharge process and to identify inefficiencies to care and potential solutions. Using paper, pens, and sticky notes, group members jointly mapped out the discharge pathways of their respective facilities and jointly identified all stages of the process. Data were captured using worksheets and audio recordings. A trained research assistant facilitated <strong>FGD</strong> two weeks after direct observation concluded with patient caregivers. Participants were asked to respond to open-ended questions that focused on their experiences regarding their child’s admission, hospital stay, discharge and post-discharge. All FGDs were digitally recorded, transcribed verbatim and translated into English by external individuals fluent in the languages. Healthcare provider working groups engaged in two brainstorming sessions per hospital to develop a map of each hospital’s current pediatric discharge process and to identify inefficiencies to care and potential solutions. <br /> <br /><strong>Ethics Declaration:</strong> Ethical approvals were obtained from Makerere University (HDREC #850), Uganda National Council for Science and Technology (#HS929ES) and the University of British Columbia (UBC C&W REB # H20-02519).<br /> <br /><strong>Study Protocol & Supplementary Materials:</strong> <br /> <a href = "https://doi.org/10.5683/SP3/IDLGNN">Smart Discharges Transition to Scale</a><br /> <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.
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Knappett, Martina; Nguyen, Vuong; Chaudhry, Maryum; Trawin, Jessica; Kabakyenga, Jerome; Kumbakumba, Elias; Jacob, Shevin T; Ansermino, J Mark; Kissoon, Niranjan; Kenya-Mugisha, Nathan; Wiens, Matthew O 2024-02-02 <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>. <br/><strong>Background:</strong> Under-five mortality remains concentrated in resource-poor countries. Post-discharge mortality is becoming increasingly recognized as a significant contributor to overall child mortality. With a substantial recent expansion of research and novel data synthesis methods, this study aims to update the current evidence base by providing a more nuanced understanding of the burden and associated risk factors of pediatric post-discharge mortality after acute illness.<br /> <br /><strong>Methods:</strong> Eligible studies published between January 1, 2017 and January 31, 2023, were retrieved using MEDLINE, Embase, and CINAHL databases. Studies published before 2017 were identified in a previous review and added to the total pool of studies. Only studies from countries with low or low-middle Socio-Demographic Index with a post-discharge observation period greater than seven days were included. Risk of bias was assessed using a modified version of the Joanna Briggs Institute critical appraisal tool for prevalence studies. Studies were grouped by patient population, and 6-month post-discharge mortality rates were quantified by random-effects meta-analysis. Secondary outcomes included post-discharge mortality relative to in-hospital mortality, pooled risk factor estimates, and pooled post-discharge Kaplan–Meier survival curves. PROSPERO study registration: #CRD42022350975.<br /> <br /><strong>Findings:</strong> Of 1963 articles screened, 42 eligible articles were identified and combined with 22 articles identified in the previous review, resulting in 64 total articles. These articles represented 46 unique patient cohorts and included a total of 105,560 children. For children admitted with a general acute illness, the pooled risk of mortality six months post-discharge was 4.4% (95% CI: 3.5%–5.4%, I2 = 94.2%, n = 11 studies, 34,457 children), and the pooled in-hospital mortality rate was 5.9% (95% CI: 4.2%–7.7%, I2 = 98.7%, n = 12 studies, 63,307 children). Among disease subgroups, severe malnutrition (12.2%, 95% CI: 6.2%–19.7%, I2 = 98.2%, n = 10 studies, 7760 children) and severe anemia (6.4%, 95% CI: 4.2%–9.1%, I2 = 93.3%, n = 9 studies, 7806 children) demonstrated the highest 6-month post-discharge mortality estimates. Diarrhea demonstrated the shortest median time to death (3.3 weeks) and anemia the longest (8.9 weeks). Most significant risk factors for post-discharge mortality included unplanned discharges, severe malnutrition, and HIV seropositivity.<br /> <br /><strong>Interpretation:</strong> Pediatric post-discharge mortality rates remain high in resource-poor settings, especially among children admitted with malnutrition or anemia. Global health strategies must prioritize this health issue by dedicating resources to research and policy innovation.<br /> <br /><strong>Data Processing Methods:</strong> Data were extracted using a standard data extraction form developed by the review authors. Kaplan–Meier survival curves, where provided, were extracted using a plot digitizer. The data extraction file, “PDMSR2024_DataExtraction_Dataset_SD” was generated as described above and analyzed as is. <br /> <br />Co-ordinates were extracted from the survival curves in their original, published form, using a plot digitizer (https://automeris.io/WebPlotDigitizer/). The co-ordinates for each survival curve were then cleaned up to: <br /> <br />1. Re-scale the time points to weeks<br /> 2. Curves which reported % mortality were converted to % survival (1 – mortality)<br /> 3. First co-ordinate was set to (0, 1), i.e., survival is 100% at time-point 0<br /> 4. Include the numbers at risk (if reported), primary reference, and subgroup information<br /> <br />Using these cleaned co-ordinates, individual-level patient data were extracted (see Guyot et al, 2012, <a href = "https://bmcmedresmethodol.biomedcentral.com/articles/10.1186/1471-2288-12-9">doi.org/10.1186/1471-2288-12-9</a>) and the survival curves re-constructed to obtain the survival and number at risk at specified time-points (0-52 weeks). Where possible, disease and age subgroups were combined to create all admissions curves by combining the individual-level patient data from multiple curves in the same study. <br /> <br />Additional data from the survival curves were extracted to produce the “PDMSR2024_AdditionalDataSurvivalCurves6M_Dataset_SD” and “PDMSR2024_AdditionalDataSurvivalCurves12M_Dataset_SD” files by extracting the survival rate at 6 and 12 months. <br /> <br />Previously unpublished hazards ratios were extracted from the dataset used in the Wiens et al (2015) study on post-discharge mortality (<a href = "https://doi.org/10.1136%2Fbmjopen-2015-009449">doi:10.1136/bmjopen-2015-009449</a>) to produce the “PDMSR2024_Wiens2015HazardsRatios_Dataset_SD.xlsx” file. These original data are published on Dataverse at: <a href = "https://doi.org/10.5683/SP2/VBPLRM">doi.org/10.5683/SP2/VBPLRM</a> <br /> <br />Analyses were in R version 4.3.0 (R Foundation for Statistical Computing, Vienna, Austria), and RStudio version 2023.6.1 (RStudio, Boston, MA). <br /> <br /><strong>Additional Files:</strong> Survival curves in their original, published form, as well as survival curve coordinates files can be made available by request.
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Wiens, Matthew; Trawin, Jessica; Komugisha, Clare; Mwaka, Savio; Nsungwa, Jesca; Kissoon, Niranjan; Ansermino, J Mark; Kenya-Mugisha, Nathan 2023-06-15 <br /><strong>Dataset Description:</strong> This dataset contains materials from a the Smart Discharges Transition to Scale parent study within the <a href = "https://bcchr.ca/smart-discharges">Smart Discharges</a> program of research. Materials include the parent study protocol and associated documents. See the Metadata section below for links to related publications and datasets.<br /> <br /><strong>Background:</strong> In Uganda, approximately 5% of children admitted with severe infections die after they have been discharged from the hospital, mostly at home. Most of these deaths are preventable as they are largely due to the way that discharges are done and how follow-ups are planned. Health workers and caregivers are often unaware of this period of vulnerability and are poorly equipped to identify and handle this critical situation. Our previous work focused on developing and evaluating models and technology to predict, before discharge, an individual child’s risk of recurrent illness, as well as to provide additional post-discharge support to at-risk children. The goal of this project is to determine how best to scale the Smart Discharges Program through a four-phased approach, each corresponding to a specific objective. <strong>Phase I :</strong> aims to understand the reasons for suboptimal discharge by evaluating the pediatric discharge process from hospital admission through the transition to care within the community. <strong>Phase II :</strong> aims to assess pediatric discharge policies and facility readiness for change in a nationally representative sample of health facilities in Uganda. <strong>Phase III :</strong> aims to evaluate the effects of the Smart Discharges Health Worker Training Program on discharge care practices and procedures. <strong>Phase IV :</strong> aims to complete the facility-based linkage to care through the use of a community-based follow-up system. <br /> <br /><strong>Methods:</strong> Each of the four project phases utilizes different research methodologies. <strong>Phase I </strong> is a mixed methods prospective study utilizing patient journey mapping, discharge process mapping, and focus group discussions at 3 Ugandan Hospitals. <strong>Phase II </strong> is a cross-sectional, survey-based study conducted at 36 health facilities providing in-patient pediatric care in Uganda. <strong>Phase III and IV :</strong> (implemented together) is a quality improvement intervention at 16 health facilities in Uganda. <br /> <br /><strong>Discussion:</strong> Ultimately this work is focused on ensuring widespread adoption of Smart Discharges practices throughout Uganda by building capacity that ensures sustainability. Exploring and characterizing the existing pediatric discharge process, including human and health system factors that impact this process, will allow us to operationalize the Smart Discharges innovation into an effective health-systems approach to this neglected issue.<br /> <br /><strong>Ethics Declaration:</strong> Ethics approvals have been obtained from the Makerere University School of Public Health (MakSPH) Institutional Review Board (PI: 850; PII: 851; PIII/IV: 836), the Uganda National Council of Science and Technology (UNCST) in Uganda (PI: HS929ES; PII: HS928ES; PIII/IV: HS926ES) and the University of British Columbia in Canada (PI-IV: H20-02519). <br /> <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>.
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Hooft, Anneka; Kornblith, Aaron E; Umhoza, Christian; Trawin, Jessica; Mfuranziza, Cynthia Grace; Uwiragiye, Emmanuel; Zhang, Cherri; Nguyen, Vuong; Lewis, Peter; Wiens, Matthew O 2024-04-11 <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 at <a href = mailto:sepsiscolab@bccchr.ca>sepsiscolab@bcchr.ca</a> or visit our <a href = "https://wfpiccs.org/pediatric-sepsis-colab/">website</a>. <br/><strong>Background:</strong>Mortality following hospital discharge remains a significant threat to child health, particularly in resource-limited settings. In Uganda, the Smart Discharges risk-prediction models have demonstrated success in their ability to predict those at highest risk of death after discharge and use this to guide a risk-based approach to post-discharge care in children admitted with suspected sepsis. Respective prediction models for post-discharge mortality in ages 0-6 months and ages 6-60 months were developed in this cohort but have not yet been validated outside of Uganda. This study aimed to externally validate existing risk prediction models for pediatric post-discharge mortality within the Rwandan context.<br /> <br /><strong>Methods:</strong> Prospective cohort of children 0d-60 mos admitted with suspected sepsis at two hospitals in Rwanda: Ruhengeri Referral Hospital in Musanze (rural) and University Hospital of Kigali in Kigali (urban) from May 2022 to February 2023. Vital status follow up was conducted at 2-, 4- and 6-months post-discharge.<br /> <br />Five existing models from Smart Discharges Uganda were validated in this cohort: two models for children 0-6 months, and three for children 6-60 months. Models were applied to each participant in the Rwanda cohort to obtain a risk score which was then used to calculate predicted probability of post-discharge death. Model performance was evaluated by comparing to observed outcomes and to determine sensitivity, specificity, and AUROC. Threshold was set at 80% sensitivity. .<br /> <br /><strong>Findings:</strong>In a cohort of 1218 children, 1123 children (96.7%) completed follow up. The overall rate of post-discharge mortality was 4.8% (n=58). The highest performing models had an AUROC of 0.75 (0-6 mos) and 0.74 (6-60mos), respectively. All five prediction models tested achieved an AUROC greater than 0.7 (range 0.706 - 0.738). Model degradation (determined by the percent reduction in AUC between the original model and the derived model) was relatively low, ranging from from 1.1% to 7.7%. Calibration plots showed good calibration for all models at predicted probabilities below 10%. There were too few outcomes to assess calibration among those at higher levels of predicted risk. <br /> <br /><strong>Data Processing Methods:</strong> <br /> <br /><strong>Ethics Declaration:</strong> Ethical approval was obtained from the University of Rwanda College of Medicine and Health Sciences (No 411/CMHS IRB/2021); University Teaching Hospital of Kigali (EC/CHUK/005/2022), University of California San Francisco (381688) and the University of British Columbia (H21-02795).<br />

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