A novel approach for exposing and sharing clinical data: the Translator Integrated Clinical and Environmental Exposures Service

• Published in: Journal of the American Medical Informatics Association : JAMIA Vol. 26; no. 10; pp. 1064 - 1073
• Main Authors: Fecho, Karamarie, Pfaff, Emily, Xu, Hao, Champion, James, Cox, Steve, Stillwell, Lisa, Peden, David B, Bizon, Chris, Krishnamurthy, Ashok, Tropsha, Alexander, Ahalt, Stanley C
• Format: Journal Article
• Language: English
• Published: England Oxford University Press 01.10.2019
• Subjects: Access to Information; Asthma; Censuses; Computational Biology; Datasets as Topic; Environmental Exposure; Female; Government Regulation; Humans; Information Dissemination; Intersectoral Collaboration; Male; Particulate Matter; Research and Applications; Translational Medical Research; United States; User-Computer Interface; United States; open science; data harmonization; semantic harmonization; patient privacy; regulatory compliance; data integration; environmental data; clinical data
• ISSN: 1527-974X; 1067-5027; 1527-974X
• DOI: 10.1093/jamia/ocz042

This study aimed to develop a novel, regulatory-compliant approach for openly exposing integrated clinical and environmental exposures data: the Integrated Clinical and Environmental Exposures Service (ICEES). The driving clinical use case for research and development of ICEES was asthma, which is a common disease influenced by hundreds of genes and a plethora of environmental exposures, including exposures to airborne pollutants. We developed a pipeline for integrating clinical data on patients with asthma-like conditions with data on environmental exposures derived from multiple public data sources. The data were integrated at the patient and visit level and used to create de-identified, binned, "integrated feature tables," which were then placed behind an OpenAPI. Our preliminary evaluation results demonstrate a relationship between exposure to high levels of particulate matter ≤2.5 µm in diameter (PM2.5) and the frequency of emergency department or inpatient visits for respiratory issues. For example, 16.73% of patients with average daily exposure to PM2.5 >9.62 µg/m3 experienced 2 or more emergency department or inpatient visits for respiratory issues in year 2010 compared with 7.93% of patients with lower exposures (n = 23 093). The results validated our overall approach for openly exposing and sharing integrated clinical and environmental exposures data. We plan to iteratively refine and expand ICEES by including additional years of data, feature variables, and disease cohorts. We believe that ICEES will serve as a regulatory-compliant model and approach for promoting open access to and sharing of integrated clinical and environmental exposures data.