Evaluating the Quality and Usability of Open Data for Public Health Research: A Systematic Review of Data Offerings on 3 Open Data Platforms

Background There is a recognized need to improve how scholarly data are managed and accessed. The scientific community has proposed the findable, accessible, interoperable, and reusable (FAIR) data principles to address this issue. Objective The objective of this case study was to develop a system for improving the FAIRness of Healthcare Cost and Utilization Project's State Emergency Department Databases (HCUP's SEDD) within the context of data catalog availability. Materials and Methods A search tool, EDCat (Emergency Department Catalog), was designed to improve the “FAIRness” of electronic health databases and tested on datasets from HCUP-SEDD. ElasticSearch was used as a database for EDCat's search engine. Datasets were curated and defined. Searchable data dictionary-related elements and unified medical language system (UMLS) concepts were included in the curated metadata. Functionality to standardize search terms using UMLS concepts was added to the user interface. Results The EDCat system improved the overall FAIRness of HCUP-SEDD by improving the findability of individual datasets and increasing the efficacy of searches for specific data elements and data types. Discussion The databases considered for this case study were limited in number as few data distributors make the data dictionaries of datasets available. The publication of data dictionaries should be encouraged through the FAIR principles, and further efforts should be made to improve the specificity and measurability of the FAIR principles. Conclusion In this case study, the distribution of datasets from HCUP-SEDD was made more FAIR through the development of a search tool, EDCat. EDCat will be evaluated and developed further to include datasets from other sources.

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“…Overall, variation in adherence to standards and best practices impacts overall data usability and utility. 7 The Emergence of FAIR…”

Section: Barriers In Findability and Accessibilitymentioning

confidence: 99%

Applying FAIR Principles to Improve Data Searchability of Emergency Department Datasets: A Case Study for HCUP-SEDD

et al. 2020

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“…Searching and browsing functionalities of the repositories were evaluated using similar methods used to evaluate medical digital libraries (Ismond & Shiri, 2007). Metadata were evaluated using selected parameters from a previous study on metadata quality in United States open health data repositories (Martin et al, 2017). In particular, the identified and selected Canadian open health data repositories were examined and compared in terms of their searching, browsing and navigation functionalities, the richness of metadata description practices, as well as their metadata-based filtering mechanisms.…”

Section: Evaluation Methodsmentioning

confidence: 99%

“…In order to benefit most from these information resources, the open health data must be easy to search and retrieve which depends on the quality of its metadata, i.e. the data about the data (Martin et al, 2017). Identification and documentation of metadata practices and formats for open data repositories will ensure creation of a solid basis upon which subject and semantic interoperability can be implemented.…”

Section: Introductionmentioning

confidence: 99%

Canada’s Health Data Repositories: Challenges of Organization, Discoverability and Access

Shiri

Thornton

2019

CAIS/ACSI

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Evidence-based medicine relies on health data. Open health data initiatives need to be supported with data repositories that are optimized for searchability and discoverability. Five Canadian open health data repositories were evaluated for metadata-based searching, browsing, and navigational functionalities. In the different national, provincial and institutional open data repositories evaluated, the preliminary findings reveal the variability in these functionalities. This research will contribute to the development of guidelines and best practices for implementing metadata and searching and browsing functionalities for open health data repositories that will ultimately lead to a more interoperable open health data environment.

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“…In most cases, the datasets are in a nonproprietary format and are free of charge. Although such datasets can provide unlimited opportunities for decisionmakers, institutions, and researchers, their quality and usability are yet to be determined (14).…”

Section: Key Concepts and Terminologiesmentioning

confidence: 99%

Open data and public health

D’Agostino¹,

Samuel²,

Sarol³

et al. 2018

Rev Panam Salud Publica

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This article provides an overview of the intersection of open data and public health by first defining open government data, public health data, and other key concepts and relevant terminologies. There are differing perceptions on the urgency and importance of the openness of public health data. It has been established that disease outbreaks such as happened during the Ebola and Zika virus epidemics are indicative of the need for countries to develop a framework that will provide guidance for the management of public health data. Such a framework should ensure that data collected during public health emergencies are accessible to the appropriate authorities and in a form that can help with timely decision-making during such public health crises. In this article, we highlight available open data policies across many countries, including in the Americas. Our analysis shows that there are currently no articulated policy guidelines for the collection and management of public health data across many countries, especially in Latin America. We propose that any national data governance strategy must address potential benefits, possible risks, examples of data that could be shared, and the attributes of such data. Finally, we stress that the key concern in the Americas should be the development of regional frameworks for open data in public health that can be adopted or adapted by each country through appropriate national or subnational policies and strategies.

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Evaluating the Quality and Usability of Open Data for Public Health Research: A Systematic Review of Data Offerings on 3 Open Data Platforms

Abstract: Although all platforms need improvement, they already provide readily available data for health research. Sustained effort on improving open data websites and metadata is necessary for ensuring researchers use these data, thereby increasing their research value.

Cited by 46 publications

References 28 publications

Applying FAIR Principles to Improve Data Searchability of Emergency Department Datasets: A Case Study for HCUP-SEDD

Applying FAIR Principles to Improve Data Searchability of Emergency Department Datasets: A Case Study for HCUP-SEDD

Canada’s Health Data Repositories: Challenges of Organization, Discoverability and Access

Open data and public health

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