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Article ; Online: A Method for Generating Dashboard Aggregations in an International HIV Consortium.

Lewis, Judith T / Brazier, Ellen / Katz, Benjamin / Nash, Denis / Duda, Stephany N

Studies in health technology and informatics

2022 Volume 290, Page(s) 1048–1049

Abstract: Online dashboards are valuable tools for gaining insights about population health metrics of interest and for disseminating data collected through research networks. The process of aggregating data from separate databases for use in online dashboards, ... ...

Abstract	Online dashboards are valuable tools for gaining insights about population health metrics of interest and for disseminating data collected through research networks. The process of aggregating data from separate databases for use in online dashboards, while also ensuring data quality, is complex. We describe a method for integrating HIV dashboard aggregation scripts into an existing web-based data quality checking application and leveraging REDCap to store aggregated metrics.
MeSH term(s)	Databases, Factual ; Delivery of Health Care ; HIV Infections ; Humans ; Research Design ; Software
Language	English
Publishing date	2022-06-04
Publishing country	Netherlands
Document type	Journal Article
ISSN	1879-8365
ISSN (online)	1879-8365
DOI	10.3233/SHTI220261
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Multiwave validation sampling for error‐prone electronic health records

Shepherd, Bryan E. / Han, Kyunghee / Chen, Tong / Bian, Aihua / Pugh, Shannon / Duda, Stephany N. / Lumley, Thomas / Heerman, William J. / Shaw, Pamela A.

Biometrics. 2023 Sept., v. 79, no. 3 p.2649-2663

2023

Abstract: Electronic health record (EHR) data are increasingly used for biomedical research, but these data have recognized data quality challenges. Data validation is necessary to use EHR data with confidence, but limited resources typically make complete data ... ...

Abstract	Electronic health record (EHR) data are increasingly used for biomedical research, but these data have recognized data quality challenges. Data validation is necessary to use EHR data with confidence, but limited resources typically make complete data validation impossible. Using EHR data, we illustrate prospective, multiwave, two‐phase validation sampling to estimate the association between maternal weight gain during pregnancy and the risks of her child developing obesity or asthma. The optimal validation sampling design depends on the unknown efficient influence functions of regression coefficients of interest. In the first wave of our multiwave validation design, we estimate the influence function using the unvalidated (phase 1) data to determine our validation sample; then in subsequent waves, we re‐estimate the influence function using validated (phase 2) data and update our sampling. For efficiency, estimation combines obesity and asthma sampling frames while calibrating sampling weights using generalized raking. We validated 996 of 10,335 mother‐child EHR dyads in six sampling waves. Estimated associations between childhood obesity/asthma and maternal weight gain, as well as other covariates, are compared to naïve estimates that only use unvalidated data. In some cases, estimates markedly differ, underscoring the importance of efficient validation sampling to obtain accurate estimates incorporating validated data.
Keywords	asthma ; biomedical research ; childhood obesity ; children ; data quality ; pregnancy ; telemedicine ; weight gain
Language	English
Dates of publication	2023-09
Size	p. 2649-2663.
Publishing place	John Wiley & Sons, Ltd
Document type	Article ; Online
Note	JOURNAL ARTICLE
ZDB-ID	213543-7
ISSN	0099-4987 ; 0006-341X
ISSN	0099-4987 ; 0006-341X
DOI	10.1111/biom.13713
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Article ; Online: The REDCap Mobile Application: a data collection platform for research in regions or situations with internet scarcity.

Harris, Paul A / Delacqua, Giovanni / Taylor, Robert / Pearson, Scott / Fernandez, Michelle / Duda, Stephany N

JAMIA open

2021 Volume 4, Issue 3, Page(s) ooab078

Abstract: Objectives: To share our approach for designing, developing, and deploying the Research Electronic Data Capture (REDCap) Mobile Application, details about its dissemination and support through the REDCap Consortium, and a set of lessons learned and ... ...

Abstract	Objectives: To share our approach for designing, developing, and deploying the Research Electronic Data Capture (REDCap) Mobile Application, details about its dissemination and support through the REDCap Consortium, and a set of lessons learned and guidance recommendations for others developing mobile platforms to support research in regions or situations with internet scarcity. Materials and methods: We defined minimum viable product requirements centered around Android and iOS platform availability, data capture specifications and project initiation workflow, study data synchronization, and data security. After launch, we added features based on feedback from end-users and REDCap administrators. We prioritized new features based on expected impact, difficulty, and anticipated long-term cost for sustainability. Results: We chose Apache Cordova, a combined iOS and Android development framework, based on targeted end-user technology expectations, available programmer resources, and the need to provide solutions for resource-limited settings. The REDCap Mobile Application was launched in 2015, has been enabled at over 800 REDCap Consortium partner organizations, and has supported diverse scientific studies around the world. Discussion: Apache Cordova enabled early software releases for both iOS and Android, but required ongoing optimization efforts to improve software responsiveness. Developing a robust and efficient mobile device synchronization architecture was difficult without direct access to global network infrastructures for testing. Research teams in sub-Saharan Africa helped our development team understand and simulate real-world scenarios of intermittent internet connectivity. Conclusion: Guidance recommendations based on designing, developing, deploying, and disseminating the REDCap Mobile Application may help other teams looking to develop clinical research informatics applications.
Language	English
Publishing date	2021-09-13
Publishing country	United States
Document type	Journal Article
ISSN	2574-2531
ISSN (online)	2574-2531
DOI	10.1093/jamiaopen/ooab078
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: HL7 FHIR-based tools and initiatives to support clinical research: a scoping review.

Duda, Stephany N / Kennedy, Nan / Conway, Douglas / Cheng, Alex C / Nguyen, Viet / Zayas-Cabán, Teresa / Harris, Paul A

Journal of the American Medical Informatics Association : JAMIA

2022 Volume 29, Issue 9, Page(s) 1642–1653

Abstract: Objectives: The HL7® fast healthcare interoperability resources (FHIR®) specification has emerged as the leading interoperability standard for the exchange of healthcare data. We conducted a scoping review to identify trends and gaps in the use of FHIR ... ...

Abstract	Objectives: The HL7® fast healthcare interoperability resources (FHIR®) specification has emerged as the leading interoperability standard for the exchange of healthcare data. We conducted a scoping review to identify trends and gaps in the use of FHIR for clinical research. Materials and methods: We reviewed published literature, federally funded project databases, application websites, and other sources to discover FHIR-based papers, projects, and tools (collectively, "FHIR projects") available to support clinical research activities. Results: Our search identified 203 different FHIR projects applicable to clinical research. Most were associated with preparations to conduct research, such as data mapping to and from FHIR formats (n = 66, 32.5%) and managing ontologies with FHIR (n = 30, 14.8%), or post-study data activities, such as sharing data using repositories or registries (n = 24, 11.8%), general research data sharing (n = 23, 11.3%), and management of genomic data (n = 21, 10.3%). With the exception of phenotyping (n = 19, 9.4%), fewer FHIR-based projects focused on needs within the clinical research process itself. Discussion: Funding and usage of FHIR-enabled solutions for research are expanding, but most projects appear focused on establishing data pipelines and linking clinical systems such as electronic health records, patient-facing data systems, and registries, possibly due to the relative newness of FHIR and the incentives for FHIR integration in health information systems. Fewer FHIR projects were associated with research-only activities. Conclusion: The FHIR standard is becoming an essential component of the clinical research enterprise. To develop FHIR's full potential for clinical research, funding and operational stakeholders should address gaps in FHIR-based research tools and methods.
MeSH term(s)	Delivery of Health Care ; Electronic Health Records ; Health Information Systems ; Health Level Seven ; Humans
Language	English
Publishing date	2022-07-12
Publishing country	England
Document type	Journal Article ; Review ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, Non-P.H.S.
ZDB-ID	1205156-1
ISSN	1527-974X ; 1067-5027
ISSN (online)	1527-974X
ISSN	1067-5027
DOI	10.1093/jamia/ocac105
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Article ; Online: Multiwave validation sampling for error-prone electronic health records.

Shepherd, Bryan E / Han, Kyunghee / Chen, Tong / Bian, Aihua / Pugh, Shannon / Duda, Stephany N / Lumley, Thomas / Heerman, William J / Shaw, Pamela A

Biometrics

2022 Volume 79, Issue 3, Page(s) 2649–2663

Abstract	Electronic health record (EHR) data are increasingly used for biomedical research, but these data have recognized data quality challenges. Data validation is necessary to use EHR data with confidence, but limited resources typically make complete data validation impossible. Using EHR data, we illustrate prospective, multiwave, two-phase validation sampling to estimate the association between maternal weight gain during pregnancy and the risks of her child developing obesity or asthma. The optimal validation sampling design depends on the unknown efficient influence functions of regression coefficients of interest. In the first wave of our multiwave validation design, we estimate the influence function using the unvalidated (phase 1) data to determine our validation sample; then in subsequent waves, we re-estimate the influence function using validated (phase 2) data and update our sampling. For efficiency, estimation combines obesity and asthma sampling frames while calibrating sampling weights using generalized raking. We validated 996 of 10,335 mother-child EHR dyads in six sampling waves. Estimated associations between childhood obesity/asthma and maternal weight gain, as well as other covariates, are compared to naïve estimates that only use unvalidated data. In some cases, estimates markedly differ, underscoring the importance of efficient validation sampling to obtain accurate estimates incorporating validated data.
MeSH term(s)	Humans ; Child ; Female ; Pregnancy ; Pediatric Obesity ; Gestational Weight Gain ; Electronic Health Records ; Prospective Studies ; Asthma/epidemiology
Language	English
Publishing date	2022-07-11
Publishing country	United States
Document type	Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, N.I.H., Extramural
ZDB-ID	213543-7
ISSN	1541-0420 ; 0099-4987 ; 0006-341X
ISSN (online)	1541-0420
ISSN	0099-4987 ; 0006-341X
DOI	10.1111/biom.13713
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Article ; Online: Facility-Based Indicators to Manage and Scale Up Cervical Cancer Prevention and Care Services for Women Living With HIV in Sub-Saharan Africa: a Three-Round Online Delphi Consensus Method.

Davidović, Maša / Asangbeh, Serra Lem / Taghavi, Katayoun / Dhokotera, Tafadzwa / Jaquet, Antoine / Musick, Beverly / Van Schalkwyk, Cari / Schwappach, David / Rohner, Eliane / Murenzi, Gad / Wools-Kaloustian, Kara / Anastos, Kathryn / Omenge, Orang'o Elkanah / Boni, Simon Pierre / Duda, Stephany N / von Groote, Per / Bohlius, Julia

Journal of acquired immune deficiency syndromes (1999)

2024 Volume 95, Issue 2, Page(s) 170–178

Abstract: Background: Of women with cervical cancer (CC) and HIV, 85% live in sub-Saharan Africa, where 21% of all CC cases are attributable to HIV infection. We aimed to generate internationally acceptable facility-based indicators to monitor and guide scale up ... ...

Abstract	Background: Of women with cervical cancer (CC) and HIV, 85% live in sub-Saharan Africa, where 21% of all CC cases are attributable to HIV infection. We aimed to generate internationally acceptable facility-based indicators to monitor and guide scale up of CC prevention and care services offered on-site or off-site by HIV clinics. Methods: We reviewed the literature and extracted relevant indicators, grouping them into domains along the CC control continuum. From February 2021 to March 2022, we conducted a three-round, online Delphi process to reach consensus on indicators. We invited 106 experts to participate. Through an anonymous, iterative process, participants adapted the indicators to their context (round 1), then rated them for 5 criteria on a 5-point Likert-type scale (rounds 2 and 3) and then ranked their importance (round 3). Results: We reviewed 39 policies from 21 African countries and 7 from international organizations; 72 experts from 15 sub-Saharan Africa countries or international organizations participated in our Delphi process. Response rates were 34% in round 1, 40% in round 2, and 44% in round 3. Experts reached consensus for 17 indicators in the following domains: primary prevention (human papillomavirus prevention, n = 2), secondary prevention (screening, triage, treatment of precancerous lesions, n = 11), tertiary prevention (CC diagnosis and care, n = 2), and long-term impact of the program and linkage to HIV service (n = 2). Conclusion: We recommend that HIV clinics that offer CC control services in sub-Saharan Africa implement the 17 indicators stepwise and adapt them to context to improve monitoring along the CC control cascade.
MeSH term(s)	Humans ; Female ; HIV Infections/diagnosis ; HIV Infections/drug therapy ; HIV Infections/prevention & control ; Uterine Cervical Neoplasms/diagnosis ; Uterine Cervical Neoplasms/prevention & control ; Consensus ; Delphi Technique ; Africa South of the Sahara/epidemiology
Language	English
Publishing date	2024-01-09
Publishing country	United States
Document type	Review ; Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	645053-2
ISSN	1944-7884 ; 1077-9450 ; 0897-5965 ; 0894-9255 ; 1525-4135
ISSN (online)	1944-7884 ; 1077-9450
ISSN	0897-5965 ; 0894-9255 ; 1525-4135
DOI	10.1097/QAI.0000000000003343
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Article ; Online: Implications of COVID-19 for HIV Research: data sources, indicators and longitudinal analyses.

Rebeiro, Peter F / Duda, Stephany N / Wools-Kaloustian, Kara K / Nash, Denis / Althoff, Keri N

Journal of the International AIDS Society

2020 Volume 23, Issue 10, Page(s) e25627

Keywords	covid19
Language	English
Publishing date	2020-10-12
Publishing country	Switzerland
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2467110-1
ISSN	1758-2652 ; 1758-2652
ISSN (online)	1758-2652
ISSN	1758-2652
DOI	10.1002/jia2.25627
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Implementation of a REDCap-Based Research Data Collection System in Cameroon.

Ngamani, Lionel / Ajeh, Rogers / Mbuh, Akindeh / Dzudie, Anastase / Duda, Stephany N

Studies in health technology and informatics

2019 Volume 264, Page(s) 1708–1709

Abstract: Implementing electronic data collection for health research can be challenging in resource-limited settings, where electricity, Internet access, and study staff with computer training may be limited. Our team has established a successful research data ... ...

Abstract	Implementing electronic data collection for health research can be challenging in resource-limited settings, where electricity, Internet access, and study staff with computer training may be limited. Our team has established a successful research data infrastructure using the REDCap software at three HIV clinics and one coordinating center in Cameroon. We describe our recommended network architecture and guidance for study data teams working in similar settings.
MeSH term(s)	Ambulatory Care Facilities ; Cameroon ; Data Collection ; HIV Infections/drug therapy ; Health Resources ; Humans ; Medical Informatics ; Research ; Software
Language	English
Publishing date	2019-08-22
Publishing country	Netherlands
Document type	Journal Article
ISSN	1879-8365
ISSN (online)	1879-8365
DOI	10.3233/SHTI190608
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: Design and implementation of a global site assessment survey among HIV clinics participating in the International epidemiology Databases to Evaluate AIDS (IeDEA) research consortium.

Brazier, Ellen / Maruri, Fernanda / Wester, C William / Musick, Beverly / Freeman, Aimee / Parcesepe, Angela / Hossmann, Stefanie / Christ, Benedikt / Kimmel, April / Humphrey, John / Freeman, Esther / Enane, Leslie A / Lancaster, Kathryn E / Ballif, Marie / Golub, Jonathan E / Nash, Denis / Duda, Stephany N

PloS one

2023 Volume 18, Issue 3, Page(s) e0268167

Abstract: Introduction: Timely descriptions of HIV service characteristics and their evolution over time across diverse settings are important for monitoring the scale-up of evidence-based program strategies, understanding the implementation landscape, and ... ...

Abstract	Introduction: Timely descriptions of HIV service characteristics and their evolution over time across diverse settings are important for monitoring the scale-up of evidence-based program strategies, understanding the implementation landscape, and examining service delivery factors that influence HIV care outcomes. Methods: The International epidemiology Databases to Evaluate AIDS (IeDEA) consortium undertakes periodic cross-sectional surveys on service availability and care at participating HIV treatment sites to characterize trends and inform the scientific agenda for HIV care and implementation science communities. IeDEA's 2020 general site assessment survey was developed through a consultative, 18-month process that engaged diverse researchers in identifying content from previous surveys that should be retained for longitudinal analyses and in developing expanded and new content to address gaps in the literature. An iterative review process was undertaken to standardize the format of new survey questions and align them with best practices in survey design and measurement and lessons learned through prior IeDEA site assessment surveys. Results: The survey questionnaire developed through this process included eight content domains covered in prior surveys (patient population, staffing and community linkages, HIV testing and diagnosis, new patient care, treatment monitoring and retention, routine HIV care and screening, pharmacy, record-keeping and patient tracing), along with expanded content related to antiretroviral therapy (differentiated service delivery and roll-out of dolutegravir-based regimens); mental health and substance use disorders; care for pregnant/postpartum women and HIV-exposed infants; tuberculosis preventive therapy; and pediatric/adolescent tuberculosis care; and new content related to Kaposi's sarcoma diagnostics, the impact of COVID-19 on service delivery, and structural barriers to HIV care. The survey was distributed to 238 HIV treatment sites in late 2020, with a 95% response rate. Conclusion: IeDEA's approach for site survey development has broad relevance for HIV research networks and other priority health conditions.
MeSH term(s)	Pregnancy ; Adolescent ; Humans ; Female ; Child ; Acquired Immunodeficiency Syndrome/diagnosis ; Acquired Immunodeficiency Syndrome/drug therapy ; Acquired Immunodeficiency Syndrome/epidemiology ; Cross-Sectional Studies ; COVID-19/epidemiology ; HIV Infections/diagnosis ; HIV Infections/drug therapy ; HIV Infections/epidemiology ; Surveys and Questionnaires ; Tuberculosis
Language	English
Publishing date	2023-03-14
Publishing country	United States
Document type	Journal Article ; Research Support, N.I.H., Extramural
ZDB-ID	2267670-3
ISSN	1932-6203 ; 1932-6203
ISSN (online)	1932-6203
ISSN	1932-6203
DOI	10.1371/journal.pone.0268167
Database	MEDical Literature Analysis and Retrieval System OnLINE

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Article ; Online: MyCap: a flexible and configurable platform for mobilizing the participant voice.

Harris, Paul A / Swafford, Jonathan / Serdoz, Emily S / Eidenmuller, Jessica / Delacqua, Giovanni / Jagtap, Vaishali / Taylor, Robert J / Gelbard, Alexander / Cheng, Alex C / Duda, Stephany N

JAMIA open

2022 Volume 5, Issue 2, Page(s) ooac047

Abstract: This paper provides a description of the MyCap data collection platform, utilization metrics, and vignettes associated with use from diverse research institutions. MyCap is a participant-facing mobile application for survey data collection and the ... ...

Abstract	This paper provides a description of the MyCap data collection platform, utilization metrics, and vignettes associated with use from diverse research institutions. MyCap is a participant-facing mobile application for survey data collection and the automated administration of active tasks (activities performed by participants using mobile device sensors under semi-controlled conditions). Launched in 2018, MyCap is a no-code solution for research teams conducting longitudinal studies, integrates tightly with REDCap and is available at no cost to research teams at academic, nonprofit, or government organizations. MyCap has been deployed at multiple research institutions with application usage logged across 135 countries in 2021. Vignettes demonstrate that MyCap empowered research teams to explore and implement novel methods of information collection and use. MyCap's integration with REDCap provides a comprehensive data collection ecosystem and is best suited for longitudinal studies with frequent requests for information from participants.
Language	English
Publishing date	2022-06-03
Publishing country	United States
Document type	Journal Article
ISSN	2574-2531
ISSN (online)	2574-2531
DOI	10.1093/jamiaopen/ooac047
Database	MEDical Literature Analysis and Retrieval System OnLINE

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