Dataset Information

MCR: Open-Source Software to Automate Compilation of Health Study Report-Back.

ABSTRACT: Sharing individualized results with health study participants, a practice we and others refer to as "report-back," ensures participant access to exposure and health information and may promote health equity. However, the practice of report-back and the content shared is often limited by the time-intensive process of personalizing reports. Software tools that automate creation of individualized reports have been built for specific studies, but are largely not open-source or broadly modifiable. We created an open-source and generalizable tool, called the Macro for the Compilation of Report-backs (MCR), to automate compilation of health study reports. We piloted MCR in two environmental exposure studies in Massachusetts, USA, and interviewed research team members (n = 7) about the impact of MCR on the report-back process. Researchers using MCR created more detailed reports than during manual report-back, including more individualized numerical, text, and graphical results. Using MCR, researchers saved time producing draft and final reports. Researchers also reported feeling more creative in the design process and more confident in report-back quality control. While MCR does not expedite the entire report-back process, we hope that this open-source tool reduces the barriers to personalizing health study reports, promotes more equitable access to individualized data, and advances self-determination among participants.

SUBMITTER: Polka E

PROVIDER: S-EPMC8201126 | biostudies-literature | 2021 Jun

REPOSITORIES: biostudies-literature

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MCR: Open-Source Software to Automate Compilation of Health Study Report-Back.

Polka Erin E Childs Ellen E Friedman Alexa A Tomsho Kathryn S KS Claus Henn Birgit B Scammell Madeleine K MK Milando Chad W CW

International journal of environmental research and public health 20210605 11

Sharing individualized results with health study participants, a practice we and others refer to as "report-back," ensures participant access to exposure and health information and may promote health equity. However, the practice of report-back and the content shared is often limited by the time-intensive process of personalizing reports. Software tools that automate creation of individualized reports have been built for specific studies, but are largely not open-source or broadly modifiable. We ...[more]

PMID: 34198866

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Project description:BackgroundElectronic health records (EHR) are a key tool in managing and storing patients' information. Currently, there are over 50 open source EHR systems available. Functionality and usability are important factors for determining the success of any system. These factors are often a direct reflection of the domain knowledge and developers' motivations. However, few published studies have focused on the characteristics of free and open source software (F/OSS) EHR systems and none to date have discussed the motivation, knowledge background, and demographic characteristics of the developers involved in open source EHR projects.ObjectiveThis study analyzed the characteristics of prevailing F/OSS EHR systems and aimed to provide an understanding of the motivation, knowledge background, and characteristics of the developers.MethodsThis study identified F/OSS EHR projects on SourceForge and other websites from May to July 2014. Projects were classified and characterized by license type, downloads, programming languages, spoken languages, project age, development status, supporting materials, top downloads by country, and whether they were "certified" EHRs. Health care F/OSS developers were also surveyed using an online survey.ResultsAt the time of the assessment, we uncovered 54 open source EHR projects, but only four of them had been successfully certified under the Office of the National Coordinator for Health Information Technology (ONC Health IT) Certification Program. In the majority of cases, the open source EHR software was downloaded by users in the United States (64.07%, 148,666/232,034), underscoring that there is a significant interest in EHR open source applications in the United States. A survey of EHR open source developers was conducted and a total of 103 developers responded to the online questionnaire. The majority of EHR F/OSS developers (65.3%, 66/101) are participating in F/OSS projects as part of a paid activity and only 25.7% (26/101) of EHR F/OSS developers are, or have been, health care providers in their careers. In addition, 45% (45/99) of developers do not work in the health care field.ConclusionThe research presented in this study highlights some challenges that may be hindering the future of health care F/OSS. A minority of developers have been health care professionals, and only 55% (54/99) work in the health care field. This undoubtedly limits the ability of functional design of F/OSS EHR systems from being a competitive advantage over prevailing commercial EHR systems. Open source software seems to be a significant interest to many; however, given that only four F/OSS EHR systems are ONC-certified, this interest is unlikely to yield significant adoption of these systems in the United States. Although the Health Information Technology for Economic and Clinical Health (HITECH) act was responsible for a substantial infusion of capital into the EHR marketplace, the lack of a corporate entity in most F/OSS EHR projects translates to a marginal capacity to market the respective F/OSS system and to navigate certification. This likely has further disadvantaged F/OSS EHR adoption in the United States.

Project description:BackgroundDigital sensing devices have become an increasingly important component of modern biomedical research, as they help provide objective insights into individuals' everyday behavior in terms of changes in motor and nonmotor symptoms. However, there are significant barriers to the adoption of sensor-enhanced biomedical solutions in terms of both technical expertise and associated costs. The currently available solutions neither allow easy integration of custom sensing devices nor offer a practicable methodology in cases of limited resources. This has become particularly relevant, given the need for real-time sensor data that could help lower health care costs by reducing the frequency of clinical assessments performed by specialists and improve access to health assessments (eg, for people living in remote areas or older adults living at home).ObjectiveThe objective of this paper is to detail the end-to-end development of a novel sensor recording software system that supports the integration of heterogeneous sensor technologies, runs as an on-demand service on consumer-grade hardware to build sensor systems, and can be easily used to reliably record longitudinal sensor measurements in research settings.MethodsThe proposed software system is based on a server-client architecture, consisting of multiple self-contained microservices that communicated with each other (eg, the web server transfers data to a database instance) and were implemented as Docker containers. The design of the software is based on state-of-the-art open-source technologies (eg, Node.js or MongoDB), which fulfill nonfunctional requirements and reduce associated costs. A series of programs to facilitate the use of the software were documented. To demonstrate performance, the software was tested in 3 studies (2 gait studies and 1 behavioral study assessing activities of daily living) that ran between 2 and 225 days, with a total of 114 participants. We used descriptive statistics to evaluate longitudinal measurements for reliability, error rates, throughput rates, latency, and usability (with the System Usability Scale [SUS] and the Post-Study System Usability Questionnaire [PSSUQ]).ResultsThree qualitative features (event annotation program, sample delay analysis program, and monitoring dashboard) were elaborated and realized as integrated programs. Our quantitative findings demonstrate that the system operates reliably on consumer-grade hardware, even across multiple months (>420 days), providing high throughput (2000 requests per second) with a low latency and error rate (<0.002%). In addition, the results of the usability tests indicate that the system is effective, efficient, and satisfactory to use (mean usability ratings for the SUS and PSSUQ were 89.5 and 1.62, respectively).ConclusionsOverall, this sensor recording software could be leveraged to test sensor devices, as well as to develop and validate algorithms that are able to extract digital measures (eg, gait parameters or actigraphy). The proposed software could help significantly reduce barriers related to sensor-enhanced biomedical research and allow researchers to focus on the research questions at hand rather than on developing recording technologies.

Dataset Information

MCR: Open-Source Software to Automate Compilation of Health Study Report-Back.

Publications

MCR: Open-Source Software to Automate Compilation of Health Study Report-Back.

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