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. 2021;10(1):9.
doi: 10.1140/epjds/s13688-021-00264-z. Epub 2021 Feb 12.

Connecting and linking neurocognitive, digital phenotyping, physiologic, psychophysical, neuroimaging, genomic, & sensor data with survey data

Charles E Knott  1 , Stephen Gomori  1 , Mai Ngyuen  1 , Susan Pedrazzani  1 , Sridevi Sattaluri  1 , Frank Mierzwa  1 , Kim Chantala  1
Affiliations

Connecting and linking neurocognitive, digital phenotyping, physiologic, psychophysical, neuroimaging, genomic, & sensor data with survey data

Charles E Knott et al. EPJ Data Sci. 2021.

Abstract

Combining survey data with alternative data sources (e.g., wearable technology, apps, physiological, ecological monitoring, genomic, neurocognitive assessments, brain imaging, and psychophysical data) to paint a complete biobehavioral picture of trauma patients comes with many complex system challenges and solutions. Starting in emergency departments and incorporating these diverse, broad, and separate data streams presents technical, operational, and logistical challenges but allows for a greater scientific understanding of the long-term effects of trauma. Our manuscript describes incorporating and prospectively linking these multi-dimensional big data elements into a clinical, observational study at US emergency departments with the goal to understand, prevent, and predict adverse posttraumatic neuropsychiatric sequelae (APNS) that affects over 40 million Americans annually. We outline key data-driven system challenges and solutions and investigate eligibility considerations, compliance, and response rate outcomes incorporating these diverse "big data" measures using integrated data-driven cross-discipline system architecture.

Keywords: Big data; Data-driven; Digital phenotyping; Interconnections; Linkage; Neurocognitive; Passive data; Physiological; Psychophysical; Systems; Wearable technologies.

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Conflict of interest statement

Competing interestsThe authors declare that they have no competing interests.

Figures

Figure 1
Figure 1
Baseline data streams. An integrated baseline program encompassing scripts, questions, graphics, instructions, and big data linkages to ease ED 3-hour protocol to incorporate phenotypic, clinical, physiological, sensor, environmental, ecological, and medical data measures
Figure 2
Figure 2
Exclusionary criteria related to big data items. The seven eligibility criteria related to ecological/passive, digital phenotyping, and online neurocognitive assessments are noted. The “ineligibility” denominator consists of n=1174 participants screened ineligible for one of these seven “big data” exclusion criteria who also provided their age
Figure 3
Figure 3
Compliance to wearable, flash surveys/digital phenotyping, and neurocognitive assessments. Interim compliance related to ecological/passive, digital phenotyping, and online neurocognitive assessments are noted
See this image and copyright information in PMC

References

    1. Bates N, Garcia Trejo YA, Vines M. Are sexual minorities hard-to-survey? Insights from the 2020 census barriers, attitudes, and motivators study (CBAMS) survey. J Off Stat. 2019;35(4):709–729. doi: 10.2478/JOS-2019-0030. - DOI
    1. Privacy: Pew Research Center (2019) Americans and privacy: concerned, confused and feeling lack of control over their personal information. https://www.pewresearch.org/internet/2019/11/15/data-privacy-methodology/. Accessed 5 Aug 2020
    1. https://2020census.gov/en/response-rates.html?cid=20423:%2Bcensus%20%2Br.... Accessed 5 Aug 2020
    1. McLean SA, Ressler K, Koenen KC, et al. The AURORA study: a longitudinal, multimodal library of brain biology and function after traumatic stress exposure. Mol Psychiatry. 2020;25(2):283–296. doi: 10.1038/s41380-019-0581-3. - DOI - PMC - PubMed
    1. American College of Emergency Physicians (ACEP) (2017) ER visits increase to highest recorded level

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