Using publicly available, interactive epidemiological dashboards: an innovative approach to sharing data from the Rakai Community Cohort Study

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dc.contributor.authorFooter, Kevin
dc.contributor.authorLake, Camille M
dc.contributor.authorPorter, Joshua R
dc.contributor.authorHa, Grace K
dc.contributor.authorAhmed, Tanvir
dc.contributor.authorGlogowski, Alex
dc.contributor.authorNdyanabo, Anthony
dc.contributor.authorGrabowski, M Kate
dc.contributor.authorChang, Larry W
dc.contributor.authorSsekasanvu, Joseph
dc.contributor.authorKagaayi, Joseph
dc.contributor.authorSerwadda, David M
dc.contributor.authorMckina, Jackie
dc.contributor.authorWhalen, Christopher
dc.contributor.authorSsentongo, Lloyd
dc.contributor.authorNsimbi, Ivan
dc.contributor.authorKakeeto, Benedicto
dc.contributor.authorKigozi, Godfrey
dc.contributor.authorSsekubugu, Robert
dc.contributor.authorLutalo, Tom
dc.contributor.authorWawer, Maria J
dc.contributor.authorGray, Ronald H
dc.contributor.authorReynolds, Steven J
dc.contributor.authorRosenthal, Alex
dc.contributor.authorQuinn, Thomas C
dc.contributor.authorTartakovsky, Michael
dc.date.accessioned2024-10-02T14:51:37Z
dc.date.available2024-10-02T14:51:37Z
dc.date.issued2024-10
dc.description.abstractPublic sharing of de-identified biomedical data promotes collaboration between researchers and accelerates the development of disease prevention and treatment strategies. However, open-access data sharing presents challenges to researchers who need to protect the privacy of study participants, ensure that data are used appropriately, and acknowledge the inputs of all involved researchers. This article presents an approach to data sharing which addresses the above challenges by using a publicly available dashboard with de-identified, aggregated participant data from a large HIV surveillance cohort.ObjectivesPublic sharing of de-identified biomedical data promotes collaboration between researchers and accelerates the development of disease prevention and treatment strategies. However, open-access data sharing presents challenges to researchers who need to protect the privacy of study participants, ensure that data are used appropriately, and acknowledge the inputs of all involved researchers. This article presents an approach to data sharing which addresses the above challenges by using a publicly available dashboard with de-identified, aggregated participant data from a large HIV surveillance cohort.Data in this study originated from the Rakai Community Cohort Study (RCCS), which was integrated into a centralized data mart as part of a larger data management strategy for the Rakai Health Sciences Program in Uganda. These data were used to build a publicly available, protected health information (PHI)-secured visualization dashboard for general research use.Materials and MethodsData in this study originated from the Rakai Community Cohort Study (RCCS), which was integrated into a centralized data mart as part of a larger data management strategy for the Rakai Health Sciences Program in Uganda. These data were used to build a publicly available, protected health information (PHI)-secured visualization dashboard for general research use.Using two unique case studies, we demonstrate the capability of the dashboard to generate the following hypotheses: firstly, that HIV prevention strategies ART and circumcision have differing levels of impact depending on the marital status of investigated communities; secondly, that ART is very successful in comparison to circumcision as an interventional strategy in certain communities.ResultsUsing two unique case studies, we demonstrate the capability of the dashboard to generate the following hypotheses: firstly, that HIV prevention strategies ART and circumcision have differing levels of impact depending on the marital status of investigated communities; secondly, that ART is very successful in comparison to circumcision as an interventional strategy in certain communities.The democratization of large-scale anonymized epidemiological data using public-facing dashboards has multiple benefits, including facilitated exploration of research data and increased reproducibility of research findings.DiscussionThe democratization of large-scale anonymized epidemiological data using public-facing dashboards has multiple benefits, including facilitated exploration of research data and increased reproducibility of research findings.By allowing the public to explore data in depth and form new hypotheses, public-facing dashboard platforms have significant potential to generate new relationships and collaborations and further scientific discovery and reproducibility.ConclusionBy allowing the public to explore data in depth and form new hypotheses, public-facing dashboard platforms have significant potential to generate new relationships and collaborations and further scientific discovery and reproducibility. MEDLINE - Academic
dc.identifier.citationFooter, Kevin, Camille M. Lake, Joshua R. Porter, et al. 'Using Publicly Available, Interactive Epidemiological Dashboards: An Innovative Approach to Sharing Data from the Rakai Community Cohort Study', JAMIA Open, vol. 7/no. 3, (2024), pp. ooae069.
dc.identifier.issnISSN 2574-2531
dc.identifier.issnEISSN 2574-2531
dc.identifier.urihttps://nru.uncst.go.ug/handle/123456789/9633
dc.language.isoen
dc.publisherOxford University Press
dc.titleUsing publicly available, interactive epidemiological dashboards: an innovative approach to sharing data from the Rakai Community Cohort Study
dc.typeArticle
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