A public health registry and intervention was created in response to the Flint water crisis to identify and refer exposed individuals to public health services to ameliorate the deleterious impact of lead exposure. Traditional technology architecture domains, funded scope of work, as well as community input were considered when defining the requirements of the selected solutions. A hybrid software solution was created using Research Electronic Data Capture (REDCap) to deploy an open participant survey and bypass requirements to create user accounts, and Epic to manage deduplication and participant communication and tracking. To bridge the two software systems, REDCap to Epic unidirectional ADT and Documentation Flowsheet interfaces were built to automate creation of subject records in Epic identical to those created in REDCap and to copy key protocol-driving variables from REDCap to Epic. The interfaces were critical to deliver a successful hybrid solution in which the desired features of each software could be leveraged to satisfy specific protocol requirements and community input. Data from the start of survey administration (December 2018) through 31 December 2020 are reported to demonstrate the usefulness of the interfaces.
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http://dx.doi.org/10.1177/14604582241249927 | DOI Listing |
JCO Clin Cancer Inform
May 2024
Department of Pediatrics, Section of Hematology/Oncology, The University of Chicago, Chicago, IL.
Purpose: Although the International Neuroblastoma Risk Group Data Commons (INRGdc) has enabled seminal large cohort studies, the research is limited by the lack of real-world, electronic health record (EHR) treatment data. To address this limitation, we evaluated the feasibility of extracting treatment data directly from EHRs using the REDCap Clinical Data Interoperability Services (CDIS) module for future submission to the INRGdc.
Methods: Patients enrolled on the Children's Oncology Group neuroblastoma biology study ANBL00B1 (ClinicalTrials.
Health Informatics J
May 2024
Michigan State University-Hurley Children's Hospital Pediatric Public Health Initiative, Charles Stewart Mott Department of Public Health, Michigan State University College of Human Medicine, Flint, MI, USA.
A public health registry and intervention was created in response to the Flint water crisis to identify and refer exposed individuals to public health services to ameliorate the deleterious impact of lead exposure. Traditional technology architecture domains, funded scope of work, as well as community input were considered when defining the requirements of the selected solutions. A hybrid software solution was created using Research Electronic Data Capture (REDCap) to deploy an open participant survey and bypass requirements to create user accounts, and Epic to manage deduplication and participant communication and tracking.
View Article and Find Full Text PDFHaemophilia
September 2023
Haemostasis and Thrombosis Unit, Division of Adult Haematology, Cliniques universitaires Saint-Luc, Université catholique de Louvain (UCLouvain), Brussels, Belgium.
Introduction: With the increasing complexity of haemophilia care and the advent of numerous therapeutic innovations, there is an unmet need for documentation and data collection tools tailored to people with haemophilia (PwH). To date, no fully integrated haemophilia-specific electronic health record (EHR) has been described in the literature.
Aim: To evaluate the feasibility of integrating a haemophilia-specific navigator into the Epic EHR.
JAMIA Open
April 2022
Division of Hematology/Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA.
Objective: To develop a clinical informatics pipeline designed to capture large-scale structured Electronic Health Record (EHR) data for a national patient registry.
Materials And Methods: The EHR-R-REDCap pipeline is implemented using R statistical software to remap and import structured EHR data into the Research Electronic Data Capture (REDCap)-based multi-institutional Merkel Cell Carcinoma (MCC) Patient Registry using an adaptable data dictionary.
Results: Clinical laboratory data were extracted from EPIC Clarity across several participating institutions.
Telemed J E Health
September 2022
Research Information Solutions and Innovation, The Abigail Wexner Research Institute, Nationwide Children's Hospital, Columbus, Ohio, USA.
The COVID-19 pandemic has hastened the adoption of telehealth and the drastic shift to an unfamiliar process may impose significant impact to the quality-of-care delivery. Many providers are interested in understanding the quality of their telehealth services from the patients' experience. A telehealth patient satisfaction survey (TPSS) was developed by using an iterative stakeholder-centered design approach, incorporating elements from validated telemedicine and customer service survey instruments, and meeting the operational needs and constraints.
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