scholarly journals EXISTING STRATEGIES FOR ELECTRONIC DATA COLLECTION BY ELDER ABUSE MULTI-DISCIPLINARY TEAMS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S423-S423
Author(s):  
Tony Rosen ◽  
David Burnes ◽  
Darin Kirchin ◽  
Alyssa Elman ◽  
Risa Breckman ◽  
...  

Abstract Elder abuse cases often require integrated responses from social services, medicine, civil legal, and criminal justice. Multi-disciplinary teams (MDTs), which meet periodically to discuss and coordinate interventions for complex cases, have developed in many communities. Little is known about how these MDTs collect case-level data. Our objective was to describe existing strategies of case-level electronic data collection conducted by MDTs across the United States as a preliminary step in developing a comprehensive database strategy. To identify MDTs currently collecting data electronically, we used a snowball sampling approach discussing with national leaders. We also sent an e-mail to the National Center for Elder Abuse listserv inviting participation. We identified and reviewed 11 databases from MDTs. Strategies for and comprehensiveness of data collection varied widely. Databases used ranged from a simple spreadsheet to a customized Microsoft Access database to large databases designed and managed by a third-party vendor. Total data fields collected ranged from 12-338. Types of data included intake/baseline case/client information, case tracking/follow-up, and case closure/outcomes. Information tracked by many MDTs, such as type of mistreatment, was not captured in a single standard fashion. Documentation about data entry processes varied from absent to detailed. We concluded that MDTs currently use widely varied strategies to track data electronically and are not capturing data in a standardized fashion. Many MDTs collect only minimal data. Based on this, we have developed recommendations for a minimum data set and optimal data structure. If widely adopted, this would potentially improve ability to conduct large-scale comparative research.

2021 ◽  
Vol 9 ◽  
Author(s):  
Michael Marks ◽  
Sham Lal ◽  
Hannah Brindle ◽  
Pierre-Stéphane Gsell ◽  
Matthew MacGregor ◽  
...  

Background: ODK provides software and standards that are popular solutions for off-grid electronic data collection and has substantial code overlap and interoperability with a number of related software products including CommCare, Enketo, Ona, SurveyCTO, and KoBoToolbox. These tools provide open-source options for off-grid use in public health data collection, management, analysis, and reporting. During the 2018–2020 Ebola epidemic in the North Kivu and Ituri regions of Democratic Republic of Congo, we used these tools to support the DRC Ministère de la Santé RDC and World Health Organization in their efforts to administer an experimental vaccine (VSV-Zebov-GP) as part of their strategy to control the transmission of infection.Method: New functions were developed to facilitate the use of ODK, Enketo and R in large scale data collection, aggregation, monitoring, and near-real-time analysis during clinical research in health emergencies. We present enhancements to ODK that include a built-in audit-trail, a framework and companion app for biometric registration of ISO/IEC 19794-2 fingerprint templates, enhanced performance features, better scalability for studies featuring millions of data form submissions, increased options for parallelization of research projects, and pipelines for automated management and analysis of data. We also developed novel encryption protocols for enhanced web-form security in Enketo.Results: Against the backdrop of a complex and challenging epidemic response, our enhanced platform of open tools was used to collect and manage data from more than 280,000 eligible study participants who received VSV-Zebov-GP under informed consent. These data were used to determine whether the VSV-Zebov-GP was safe and effective and to guide daily field operations.Conclusions: We present open-source developments that make electronic data management during clinical research and health emergencies more viable and robust. These developments will also enhance and expand the functionality of a diverse range of data collection platforms that are based on the ODK software and standards.


2018 ◽  
Author(s):  
W Scott Comulada ◽  
Wenze Tang ◽  
Dallas Swendeman ◽  
Amy Cooper ◽  
Jeremy Wacksman ◽  
...  

BACKGROUND Advancing technology has increased functionality and permitted more complex study designs for behavioral interventions. Investigators need to keep pace with these technological advances for electronic data capture (EDC) systems to be appropriately executed and utilized at full capacity in research settings. Mobile technology allows EDC systems to collect near real-time data from study participants, deliver intervention directly to participants’ mobile devices, monitor staff activity, and facilitate near real-time decision making during study implementation. OBJECTIVE This paper presents the infrastructure of an EDC system designed to support a multisite HIV biobehavioral intervention trial in Los Angeles and New Orleans: the Adolescent Medicine Trials Network “Comprehensive Adolescent Research & Engagement Studies” (ATN CARES). We provide an overview of how multiple EDC functions can be integrated into a single EDC system to support large-scale intervention trials. METHODS The CARES EDC system is designed to monitor and document multiple study functions, including, screening, recruitment, retention, intervention delivery, and outcome assessment. Text messaging (short message service, SMS) and nearly all data collection are supported by the EDC system. The system functions on mobile phones, tablets, and Web browsers. RESULTS ATN CARES is enrolling study participants and collecting baseline and follow-up data through the EDC system. Besides data collection, the EDC system is being used to generate multiple reports that inform recruitment planning, budgeting, intervention quality, and field staff supervision. The system is supporting both incoming and outgoing text messages (SMS) and offers high-level data security. Intervention design details are also influenced by EDC system platform capabilities and constraints. Challenges of using EDC systems are addressed through programming updates and training on how to improve data quality. CONCLUSIONS There are three key considerations in the development of an EDC system for an intervention trial. First, it needs to be decided whether the flexibility provided by the development of a study-specific, in-house EDC system is needed relative to the utilization of an existing commercial platform that requires less in-house programming expertise. Second, a single EDC system may not provide all functionality. ATN CARES is using a main EDC system for data collection, text messaging (SMS) interventions, and case management and a separate Web-based platform to support an online peer support intervention. Decisions need to be made regarding the functionality that is crucial for the EDC system to handle and what functionality can be handled by other systems. Third, data security is a priority but needs to be balanced with the need for flexible intervention delivery. For example, ATN CARES is delivering text messages (SMS) to study participants’ mobile phones. EDC data security protocols should be developed under guidance from security experts and with formative consulting with the target study population as to their perceptions and needs. INTERNATIONAL REGISTERED REPOR PRR1-10.2196/10777


PLoS ONE ◽  
2013 ◽  
Vol 8 (9) ◽  
pp. e74570 ◽  
Author(s):  
Jonathan D. King ◽  
Joy Buolamwini ◽  
Elizabeth A. Cromwell ◽  
Andrew Panfel ◽  
Tesfaye Teferi ◽  
...  

2019 ◽  
Author(s):  
Benedikt Ley ◽  
Komal Raj Rijal ◽  
Jutta Marfurt ◽  
Nabaraj Adhikari ◽  
Megha Banjara ◽  
...  

Abstract Objective: Electronic data collection (EDC) has become a suitable alternative to paper based data collection (PBDC) in biomedical research even in resource poor settings. During a survey in Nepal, data were collected using both systems and data entry errors compared between both methods. Collected data were checked for completeness, values outside of realistic ranges, internal logic and date variables for reasonable time frames. Variables were grouped into 5 categories and the number of discordant entries were compared between both systems, overall and per variable category. Results: Data from 52 variables collected from 358 participants were available. Discrepancies between both data sets were found in 12.6% of all entries (2352/18,616). Differences between data points were identified in 18.0% (643/3,580) of continuous variables, 15.8% of time variables (113/716), 13.0% of date variables (140/1,074), 12.0% of text variables (86/716), and 10.9% of categorical variables (1,370/12,530). Overall 64% (1,499/2,352) of all discrepancies were due to data omissions, 76.6% (1,148/1,499) of missing entries were among categorical data. Omissions in PBDC (n=1002) were twice as frequent as in EDC (n=497, p<0.001). Data omissions, specifically among categorical variables were identified as the greatest source of error. If designed accordingly, EDC can address this short fall effectively.


2021 ◽  
Author(s):  
Michael Reichold ◽  
Miriam Hess ◽  
Peter L. Kolominsky-Rabas ◽  
Elmar Gräßel ◽  
Hans-Ulrich Prokosch

BACKGROUND Digital registries have shown to provide an efficient way better to understand the clinical complexity and long-term progression of diseases. The paperless way of electronic data collection during a patient interview saves both: time and resources. In the prospective multicenter 'Digital Dementia Registry Bavaria - digiDEM Bayern', interviews are also conducted on-site in rural areas with unreliable internet connectivity. It must be ensured that electronic data collection can still be performed there, and it is no need to fall back on paper-based questionnaires. Therefore, the EDC system REDCap offers, in addition to a web-based data collection solution, the option to collect data offline via an app and synchronize it afterward. OBJECTIVE This study evaluates the usability of the REDCap app as an offline electronic data collection option for a lay user group and examines the necessary technology acceptance using mobile devices for data collection. Thereby, the feasibility of the app-based offline data collection in the dementia registry project was evaluated before going live. METHODS The study was conducted with an exploratory mixed-method in the form of an on-site usability test with the 'Thinking Aloud' method combined with a tailored semi-standardized online questionnaire including System Usability Score (SUS). The acceptance of mobile devices for the data collection was surveyed based on the technology acceptance model (TAM) with five categories. RESULTS Using the Thinking Aloud method, usability problems were identified and solutions were derived therefore. The evaluation of the REDCap app resulted in a SUS score of 74, which represents 'good' usability. After evaluating the technology acceptance questionnaire, it can be stated that the lay user group is open to mobile devices as interview tools. CONCLUSIONS The usability evaluation results show that a lay user group like the data collecting partners in the digiDEM project can handle the REDCap app well overall. The usability test provided statements about positive aspects and was able to identify usability problems of the REDCap app. In addition, the current technology acceptance in the sample showed that heterogeneous groups of different ages with different experiences in handling mobile devices are also ready for the use of app-based EDC systems. Based on the results, it can be assumed that the offline use of an app-based EDC system on mobile devices is a viable solution to collect data in a registry-based research project.


Author(s):  
Michael Farrugia ◽  
Neil Hurley ◽  
Diane Payne ◽  
Aaron Quigley

In this chapter, the authors will discuss the differences between manual data collection and electronic data collection to understand the advantages and the challenges brought by electronic social network data. They will discuss in detail the processes that are used to transform electronic data to social network data and the procedures that can be used to validate the resultant social network.


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