An Assessment of Information Exchange Practices, Challenges, and Opportunities to Support US Disease Surveillance in 3 States

García, Macarena C.; Garrett, Nedra; Singletary, Vivian; Brown, Sheereen; Hennessy-Burt, Tamara; Haney, Gillian; Link, Kim; Tripp, Jennifer A.; Kenzie, William R. Mac; Yoon, Paula W.

doi:10.1097/phh.0000000000000625

Cited by 10 publications

(8 citation statements)

References 5 publications

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“…This investigation resulted in identification of system level problems and potential solutions. Although informatics assessments have been conducted on macrolevels for infectious disease [39] and surveillance evaluations performed for Guinea worm disease [4,20,40], our approach is novel in that we assessed the information system from the surveillance need, data management, and data use perspectives for Guinea worm disease. The framework we used here could be adapted by other programs looking to assess their information systems to support surveillance and programmatic needs.…”

Section: Discussionmentioning

confidence: 99%

Assessment of the Chad guinea worm surveillance information system: A pivotal foundation for eradication

et al. 2021

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Background In the absence of a vaccine or pharmacological treatment, prevention and control of Guinea worm disease is dependent on timely identification and containment of cases to interrupt transmission. The Chad Guinea Worm Eradication Program (CGWEP) surveillance system detects and monitors Guinea worm disease in both humans and animals. Although Guinea worm cases in humans has declined, the discovery of canine infections in dogs in Chad has posed a significant challenge to eradication efforts. A foundational information system that supports the surveillance activities with modern data management practices is needed to support continued program efficacy. Methods We sought to assess the current CGWEP surveillance and information system to identify gaps and redundancies and propose system improvements. We reviewed documentation, consulted with subject matter experts and stakeholders, inventoried datasets to map data elements and information flow, and mapped data management processes. We used the Information Value Cycle (IVC) and Data-Information System-Context (DISC) frameworks to help understand the information generated and identify gaps. Results Findings from this study identified areas for improvement, including the need for consolidation of forms that capture the same demographic variables, which could be accomplished with an electronic data capture system. Further, the mental models (conceptual frameworks) IVC and DISC highlighted the need for more detailed, standardized workflows specifically related to information management. Conclusions Based on these findings, we proposed a four-phased roadmap for centralizing data systems and transitioning to an electronic data capture system. These included: development of a data governance plan, transition to electronic data entry and centralized data storage, transition to a relational database, and cloud-based integration. The method and outcome of this assessment could be used by other neglected tropical disease programs looking to transition to modern electronic data capture systems.

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Section: Discussionmentioning

confidence: 99%

Assessment of the Chad guinea worm surveillance information system: A pivotal foundation for eradication

et al. 2021

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“…Building an information system according to the system development life cycle (SDLC) methodology will promote its integrity and enterprise practicality. Data consistency and coordination is the first significant phase in the information system SDLC and should be achieved in compliance with an appropriate plan [ 20 , 21 ]. Therefore, in the initial phase of our study, the minimum data set (MDS) of suicidal behaviors was developed to determine system data requirements.…”

Section: Introductionmentioning

confidence: 99%

Design, development, and evaluation of a surveillance system for suicidal behaviors in Iran

Shafiee

Mahboubi

Yazdani

et al. 2022

BMC Med Inform Decis Mak

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Background Suicide is a serious cause of morbidity and mortality in Iran and worldwide. Although several organizations gather information on suicide and suicide attempts, there is substantial misperception regarding the description of the phenomenon. This study proposes the minimum data set (MDS) for suicidal behaviors surveillance. Methods A literature review was first conducted to achieve a thorough overview of suicide-related items and map the existing evidence supporting the development of the MDS. The data items included in the literature review were then analyzed using a two-round Delphi technique with content validation by an expert panel. The suicidal behaviors surveillance system was then established based on the confirmed MDS, and ultimately, its performance was assessed by involving the end-users. Results The panel of experts consisted of 50 experts who participated in the Delphi phase and validity content review. Of these, 46% were men, and their mean age and average work experience were (36.4, SD ± 6.4) and (12.32, SD ± 5.2) years, respectively. The final MDS platform of our study contained 108 items classified into eight main categories. A web-based system with a modular and layered architecture was developed based on the derived MDS. Conclusion The developed system provides a framework for recording suicidal behaviors' data. The integration of multiple suicide-related information systems at the regional and national levels makes it possible to assess the long-term outcomes and evolutions of suicide prevention interventions.

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“…Before the implementation of the CeGIDDs, the surveillance systems were based on the sentinel networks for bacterial STI and the mandatory notification for HIV and HBV infections [ 22 - 24 ]. However, their representativeness, sensitivity, timeliness, and flexibility remained challenges even after several decades [ 22 - 26 ]. Indeed, these surveillance systems provided a reliable information at the national level but these indicators could neither describe accurately the epidemics at a lower level, nor give a relevant insight about the CeGIDD users by subregions [ 12 , 27 ].…”

Section: Introductionmentioning

confidence: 99%

An Automated Surveillance System (SurCeGGID) for the French Sexually Transmitted Infection Clinics: Epidemiological Monitoring Study

Ngangro¹,

Pioche²,

Vaux³

et al. 2022

JMIR Form Res

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Background Viral and bacterial sexually transmitted infections (STIs) are public health concerns worldwide, but surveillance systems are not comprehensive enough to design and monitor accurately STI control strategies in most countries. In 2016, 320 STI clinics (CeGIDDs in French) were implemented in France, primarily targeting most exposed populations, although access is free of charge for anybody. Objective This article describes the mandatory surveillance system (SurCeGIDD) based on CeGIDD’s individual data aiming to better guide STI prevention. Methods A decree ensured the use of software to manage consultations in CeGIDDs and to transfer surveillance data. A web service was implemented to secure data transfer from CeGIDDs’ software to a centralized database. CeGIDDs can also transfer data in CSV format via a secured data-sharing platform. Then, data are automatically checked before integration. Data on sociodemographic variables, sexual exposure, blood exposure, symptoms, STI tests, STI diagnoses, and sexual health services delivery were collected for the previous year (n–1). Preliminary and descriptive analyses of 2017-2018 data transmitted in 2018 and 2019, respectively, were performed using numbers and proportions for qualitative variables. Results In 2017, 54/320 (16.9%) CeGIDDs transmitted their data. In 2018, this number of participants increased to 143/320 (44.7%) CeGIDDs. The corresponding volume of records increased from 2414 in 2017 to 382,890 in 2018. In 2018, most attendances were hospital based (263,480/382,890, 68.81%). In 2018, attendees were mostly men 227,326/379,921 (59.84%), while 151,963/379,921 (40%) were women 632/379,921 (0.17%) transgenders. The median age was 27 years for men, 23 years for women, and 30 years for transgender. Half of the attendees (81,964/174,932, 46.85%) were heterosexual men, 69,016/174,932 (39.45%) heterosexual women, 20,764/174,932 (11.87%) men who have sex with men, and 3188/174,932 (1.82%) women who have sex with women. A majority of them were born in France (227,698/286,289, 79.53%) and unemployed 115,913/211,707 (54.75%). The positivity rates were 0.37% for 205,348 HIV serologies, 1.31% for 131,551 hepatitis B virus serologies, 7.16% for 161,241 Chlamydia trachomatis PCR, 2.83% for 146,649 gonorrhea PCR, 1.04% for the syphilis combination of treponema and nontreponema serologies, and 5.96% for 13,313 Mycoplasma genitalium PCR. Conclusions Despite challenges, the effectiveness of the SurCeGIDD surveillance based on routine patients’ records was demonstrated. The wide range of information, including socioeconomic determinants, might help to better guide and evaluate the prevention policies and services delivery. However, the growing volumes of information will require adapted tools and algorithms for the data management and analyses.

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An Assessment of Information Exchange Practices, Challenges, and Opportunities to Support US Disease Surveillance in 3 States

Cited by 10 publications

References 5 publications

Assessment of the Chad guinea worm surveillance information system: A pivotal foundation for eradication

Assessment of the Chad guinea worm surveillance information system: A pivotal foundation for eradication

Design, development, and evaluation of a surveillance system for suicidal behaviors in Iran

An Automated Surveillance System (SurCeGGID) for the French Sexually Transmitted Infection Clinics: Epidemiological Monitoring Study

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