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1.
J Public Health Manag Pract ; 28(2): E340-E344, 2022.
Article in English | MEDLINE | ID: mdl-33208722

ABSTRACT

Newborn screening is a process identifying people with inherited metabolic disorders (IMDs) at birth, but these patients are often lost to follow-up, and limited data on their long-term needs are available to advocate for policies that will help this vulnerable community. Using informatics best practices, the Medical Nutrition Therapy for Prevention (MNT4P) program and the Public Health Informatics Institute successfully deployed a minimally viable product-that is, the most basic working version that is scalable-allowing for lifelong patient follow-up and outcome and needs tracking, and that can address national data gaps. The new system offers a HIPAA-compliant, efficient record-keeping system that allows data standardization and harmonization. MNT4P staff have transitioned completely away from former manual processes and are relying on this system to log and track patient information. Other programs serving patient populations burdened with rare, marginalized diseases also may benefit from this work.


Subject(s)
Metabolic Diseases , Neonatal Screening , Humans , Infant, Newborn , Informatics , Metabolic Diseases/diagnosis
2.
J Public Health Manag Pract ; 27(3): E143-E150, 2021.
Article in English | MEDLINE | ID: mdl-32011597

ABSTRACT

INTRODUCTION: In 2016, Puerto Rico became the focal point of the Zika epidemic, with more than 36 000 laboratory-confirmed cases before August. The Puerto Rico Department of Health (PRDH) responded by providing tests to symptomatic and asymptomatic pregnant women. The increased demand for Zika testing placed unprecedented strain on the laboratory capacity and information management processes used within the PRDH. The PRDH recognized the need to have an updated informatics system that securely manages, stores, and transmits digital data. The Centers for Disease Control and Prevention funded the Public Health Informatics Institute to collaborate with the PRDH to assess and improve the informatics capability to respond to the ongoing Zika virus transmission in Puerto Rico. APPROACH: The team employed a 4-component approach to assess the informatics system and improve the information management processes for laboratory testing and reporting of arboviral diseases (Zika, chikungunya, and dengue). The method consisted of a (1) needs assessment, (2) business process analysis and requirements definition, (3) vendor analysis, and (4) solution implementation. RESULTS: The needs assessment determined that the PRDH's procedures for arbovirus testing and reporting were highly complex and paper-based and thus did not maximize the use of existing technology. The solution was to build a Web portal. The business process analysis yielded information to create a map of the flow of specimens, an arbovirus context diagram, and more than 200 requirements. The requirements identified in this process guided the design and creation of the Web portal. DISCUSSION: This report describes the process to build a Web portal to enhance laboratory testing and electronic reporting of Zika cases during the 2016 epidemic in Puerto Rico. We demonstrate the utility of applying the Collaborative Requirements Development Methodology, a proven informatics method, to the development of a Web portal for managing arboviruses in a health department.


Subject(s)
Epidemics , Zika Virus Infection , Zika Virus , Female , Humans , Laboratories , Pregnancy , Puerto Rico/epidemiology , Zika Virus Infection/diagnosis , Zika Virus Infection/epidemiology
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