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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 />

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."

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."

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 />

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;

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;

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."

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."

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;

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."

Lowlaavar, Nasim; Larson, Charles; Kumbakumba, Elias; Zhou, Guohai; Ansermino, Mark; Singer, Joel; Kisson, Niranjan; Wong, Hubert; Ndamira, Andrew; Kabakyenga, Jerome; Kiwanuka, Julius; Wiens, Matthew — 2020-08-19 De-identified data and associated data dictionary for two studies within the Smart Discharges program. <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."

Ansermino, Mark; Wiens, Matthew; Khowaja, Asif; Kissoon, Niranjan — 2020-12-09 Data was collected from September to December 2019 via a mixed-methods approach to: 1) Identify cost drivers 2) Estimate out-of-pocket costs 3) Conduct a cost-effectiveness analysis of the Smart Discharge program. <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."

Kumbakumba, Elias; Kabakyenga, Jerome; Wiens, Matthew; Lavoie, Pascal; Businge, Stephen; Tagoola, Abner; Kenya Mugisha, Nathan; Ansermino, J Mark; Kissoon, Niranjan (Tex) — 2021-03-30 Pulse oximetry dataset from Smart Discharges <6m observational study. May 2017 to March, 2020 (Thrasher - <6m - Phase 1) <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."

Kumbakumba, Elias; Kabakyenga, Jerome; Wiens, Matthew; Lavoie, Pascal; Businge, Stephen; Tagoola, Abner; Kenya Mugisha, Nathan; Ansermino, J Mark; Kissoon, Niranjan (Tex) — 2021-04-20 Clinical outcome dataset #1 from Smart Discharges <6m observational study. May 2017 to March, 2020 (Thrasher - <6m - Phase 1). <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."

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;

Wiens, Matthew; Kabakyenga, Jerome; Kumbakumba, Elias; Businge, Stephen; Kenya-Mugisha, Nathan; Larson, Charles P; Moschovis, Peter P; Singer, Joel; Lavoie, Pascal; Dumont, Guy AM; Ansermino, J Mark; Kissoon, Niranjan — 2021-03-30 This data is a subset of the Smart Discharges Uganda Under 5 years parent study and is specific to the Phase I observational cohort of children aged 6-60 months containing <strong>pulse oximetry</strong> data.<br /> <br /><strong>Background:</strong> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. This study aimed to refine and externally validate a previously developed post-discharge mortality prediction model.<br /> <br /><strong>Methods:</strong> In this prospective observational cohort study, we recruited 6-60-month-old children admitted with suspected sepsis from the community to the paediatric wards of four Ugandan hospitals. The primary outcome was six-month post-discharge mortality among those discharged alive. <br /> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets and these data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679). This manuscript adheres to the guidelines for STrengthening the Reporting of OBservational studies in Epidemiology (STROBE). <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."

Wiens, Matthew; Kissoon, Niranjan (Tex); Ansermino, J Mark; Barigye, Celestine; Businge, Stephen; Kumbakumba, Elias; Larson, Charles; Moschovis, Peter; Singer, Joel; Lavoie, Pascal; Kabakyenga, Jerome — 2023-04-20 <br /><strong>Dataset Description:</strong> This dataset contains materials from a 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> Substantial mortality occurs after hospital discharge in children under 5 years old with suspected sepsis. A better understanding of risk and ability to mitigate risk for those who are most vulnerable is needed to reduce child mortality in resource limited settings. <br /> <br /><strong>Methods:</strong> This is a prospective before-after study with staggered implementation at six Ugandan hospitals. Phase I is a prospective observational cohort study, while Phase II is a stepped-wedge intervention. The study also includes a long-term follow-up phase.<br /> <br />The ultimate outcome to be studied is post-discharge mortality for children < 5 years old by 6 months after admission. The study has two objectives, each corresponding to a phase: <ol><li><strong>Phase I:</strong> To refine and externally validate the existing post-discharge mortality prediction model.</li> <li><strong>Phase II: </strong> To determine the effectiveness of a Smart Discharge program on post-discharge health seeking behaviour and mortality. We also seek to lay the groundwork to study the long-term effects of sepsis on morbidity over a 10 year period.</li></ol> <br /><strong>Data Collection Methods:</strong> All data were collected at the point of care using encrypted study tablets. These data were then uploaded to a Research Electronic Data Capture (REDCap) database hosted at the BC Children’s Hospital Research Institute (Vancouver, Canada). At admission, trained study nurses systematically collected data on clinical, social and demographic variables. Following discharge, field officers contacted caregivers at 2 and 4 months by phone, and in-person at 6 months, to determine vital status, post-discharge health-seeking, and readmission details. Verbal autopsies were conducted for children who had died following discharge.<br /> <br /><strong>Ethics Declaration:</strong> This study was approved by the Mbarara University of Science and Technology Research Ethics Committee (No. 15/10-16; No. 07/01-21), the Uganda National Institute of Science and Technology (HS 2207), and the University of British Columbia / Children & Women’s Health Centre of British Columbia Research Ethics Board (H16-02679).<br /> <br /><strong>Associated datasets:</strong> <br /> <a href = "https://borealisdata.ca/dataset.xhtml?persistentId=doi:10.5683/SP3/REPMSY">Post-discharge mortality among children under 5 years admitted with suspected sepsis in Uganda: a prospective multi-site study </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."

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>.

Nguyen, Vuong; Huxford, Charly; Rafiei, Alireza; Wiens, Matthew; Ansermino, J Mark; Kissoon, Niranjan; Kamaleswaran, Rishikesan — 2023-06-21 <p><br /><strong>Objective(s):</strong> The 2024 Pediatric Sepsis Data Challenge provides an opportunity to address the lack of appropriate mortality prediction models for LMICs. For this challenge, we are asking participants to develop a working, open-source algorithm to predict in-hospital mortality and length of stay using only the provided synthetic dataset. <br> <br> The original data used to generate the real-world data (RWD) informed synthetic training set available to participants was obtained from a prospective, multisite, observational cohort study of children with suspected sepsis aged 6 months to 60 months at the time of admission to hospitals in Uganda. For this challenge, we have created a RWD-informed synthetically generated training data set to reduce the risk of re-identification in this highly vulnerable population. The synthetic training set was generated from a random subset of the original data (full dataset A) of 2686 records (70% of the total dataset - training dataset B). All challenge solutions will be evaluated against the remaining 1235 records (30% of the total dataset - test dataset C). <br> <br /><strong>Data Description:</strong> Report describing the comparison of univariate and bivariate distributions between the Synthetic Dataset and Test Dataset C. Additionally, a report showing the maximum mean discrepancy (MMD) and Kullback–Leibler (KL) divergence statistics. Data dictionary for the synthetic training dataset containing 148 variables. <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>.

Li, Edmond; Mawji, Alishah; Akech, Samuel; Chandna, Arjun; Kissoon, Niranjan; Kortz, Teresa; Lubell, Yoel; Turner, Paul; Wiens, Matthew; Ansermino, Mark — 2020-02-12 These guidelines aim to maximize the efficiency of data-sharing collaborations in pediatric sepsis research by facilitating the standardization of data collection in predictors captured in future studies. <br /> <br /><b>Feedback may be submitted via a secure survey here: <a href = "https://rc.bcchr.ca/redcap/surveys/?s=T849WRXYT8">https://rc.bcchr.ca/redcap/surveys/?s=T849WRXYT8</a> </b> <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."