Amy P. Abernethy|Asif Ahmad|S. Yousuf Zafar|Jane L. Wheeler|Jennifer Barsky Reese|H. Kim Lyerly
Electronic Patient-Reported Data Capture as a Foundation of Rapid Learning Cancer Care
Duke University Health System|Duke University Hospital|Duke Medical Center|Johns Hopkins Medicine|Johns Hopkins University|Duke Medical Center
rapid learning healthcare presents new infrastructure support comparative effectiveness research leveraging heterogeneous datasets eg clinical administrative genomic registry research health information technology sophisticated iterative analyses rapid learning healthcare provides realtime framework clinical studies evaluate relative impact therapeutic approaches diverse array measuresthis article describes effort 1 academic medical center demonstrate rapid learning healthcare might look like operation article describes process developing testing components new model integrated clinicalresearch function pilot site academic oncology clinic electronic patientreported outcomes epros foundational datasetsteps included feasibility study epro system validation study epro collection across 3 cancers linking epro datasets implementation stakeholder alignment buy demonstration use casestwo use cases presented participants metastatic breast cancer n 65 gastrointestinal cancer n 113 patients 2 academic medical centers1 patientreported symptom data collected tablet computers patients breast gastrointestinal cancer indicated high levels sexual distress prompted multidisciplinary response design intervention successful application funding study interventions impact 2 system evaluated longitudinal impact psychosocial care program provided patients breast cancer participants used tablet computers complete pro surveys data indicated significant impact psychosocial outcomes notably distress despair despite advanced disease results return clinic allowing iterative update evaluationan eprobased rapid learning cancer clinic feasible providing realtime researchquality data support comparative effectiveness research