TY - JOUR
T1 - The tip of the iceberg
T2 - challenges of accessing hospital electronic health record data for biological data mining
AU - Denaxas, Spiros C.
AU - Asselbergs, Folkert W.
AU - Moore, Jason H.
PY - 2016/9/22
Y1 - 2016/9/22
N2 - Modern cohort studies include self-reported measures on disease, behavior and lifestyle, sensor-based observations from mobile phones and wearables, and rich -omics data. Follow-up is often achieved through electronic health record (EHR) linkages across primary and secondary healthcare providers. Historically however, researchers typically only get to see the tip of the iceberg: coded administrative data relating to healthcare claims which mainly record billable diagnoses and procedures. The rich data generated during the clinical pathway remain submerged and inaccessible. While some institutions and initiatives have made good progress in unlocking such deep phenotypic data within their institutional realms, access at scale still remains challenging. Here we outline and discuss the main technical and social challenges associated with accessing these data for data mining and hauling the entire iceberg.
AB - Modern cohort studies include self-reported measures on disease, behavior and lifestyle, sensor-based observations from mobile phones and wearables, and rich -omics data. Follow-up is often achieved through electronic health record (EHR) linkages across primary and secondary healthcare providers. Historically however, researchers typically only get to see the tip of the iceberg: coded administrative data relating to healthcare claims which mainly record billable diagnoses and procedures. The rich data generated during the clinical pathway remain submerged and inaccessible. While some institutions and initiatives have made good progress in unlocking such deep phenotypic data within their institutional realms, access at scale still remains challenging. Here we outline and discuss the main technical and social challenges associated with accessing these data for data mining and hauling the entire iceberg.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=84994805530&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/27688810
U2 - https://doi.org/10.1186/s13040-016-0109-1
DO - https://doi.org/10.1186/s13040-016-0109-1
M3 - Editorial
C2 - 27688810
SN - 1756-0381
VL - 9
SP - 1
EP - 4
JO - BioData mining
JF - BioData mining
IS - 1
ER -