Designing an interactive visualization tool for electronic health records
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Journal Title
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School of Arts, Design and Architecture |
Master's thesis
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Author
Date
2024
Department
Major/Subject
Mcode
Degree programme
Taiteen ja median maisteriohjelma
Language
en
Pages
120
Series
Abstract
This thesis is done in collaboration with FinnGen, an international research project that combines health record data from Finnish health registries with genetic data to better understand the connection between the human genome and health outcomes. FinnGen utilizes vast amounts of health record data from the Finnish people to provide researchers with valuable phenotypic information. This study documents the creation of an interactive data visualization platform built on FinnGen’s health registry data to facilitate users current research processes through explorative browsing. This data consists of electronic health records, which are codes used to document clinical care, standardized to the OMOP CDM, a medical ontology created by the Observational Health Data Sciences and Informatics program, or OHDSI. Electronic health records pose numerous challenges to researchers as the data can be highly variable across institutions and countries. While standardization to the OMOP CDM has been effective in answering these challenges, the process of standardization poses its own issues. To support wide-scale international research efforts, and the needs of FinnGen users in the context of FinnGen’s standardized OMOP data, this study asks what challenges researchers currently face in using electronic health records, and how a context-aware approach to interactive data visualization can help answer these challenges. A knowledge base is formed through a literature review on topics related to the context of data production, data objectivity, data standardization, contextualizing visual approaches, and related best practices in visualization. This knowledge base is then built on through background research related to electronic health records, the OMOP CDM, and associated research processes, case studies of the OHDSI ATLAS and ATHENA tools, agile prototype development, and a user study consisting of expert user interviews. Based on key insights found through these methodologies, a full-scale mockup of the platform was designed, and a first prototype was developed in React, followed by unstructured user testing. This study contributes to the discussion on issues related to electronic health records in the context of scientific research and documents the creation of a novel solution to some of these issues. A context-aware approach to data visualization is implemented by prioritizing transparency and flexibility to support use across variable contexts and to situate the data within the conditions of its production. This approach adds to discussions related to the context of data, data objectivity, user-centric design, and designing with transparency, in the context of scientific visualization tools.Description
Supervisor
Vyas, RupeshThesis advisor
Cerioli, NicolaKeywords
data visualization, information design, interaction design, medical informatics, scientific data visualization, data visualization tools, context, user-centered design
