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Aggregating Multiple Real-World Data Sources using a Patient-Centered Health Data Sharing Platform: an 8-week Cohort Study among Patients Undergoing Bariatric Surgery or Catheter Ablation of Atrial Fibrillation

By Sanket S. Dhruva, Joseph S. Ross, Joseph G. Akar, Brittany Caldwell, Karla Childers, Wing Chow, Laura Ciaccio, Paul Coplan, Jun Dong, Hayley J. Dykhoff, Stephen Johnston, Todd Kellogg, Cynthia Long, Peter A. Noseworthy, Kurt Roberts, Anindita Saha, Andrew Yoo, Nilay D Shah

Posted 02 Nov 2019
medRxiv DOI: 10.1101/19010348

Real-world data sources, including electronic health records (EHR) and personal digital device data, are increasingly available, but are often siloed and cannot be easily integrated for clinical, research, or regulatory purposes. We conducted a prospective cohort study of 60 patients undergoing bariatric surgery or catheter-based atrial fibrillation ablation at two U.S. tertiary care hospitals, testing the feasibility of using a patient-centered health data sharing platform to obtain and aggregate health data from multiple sources. We successfully obtained EHR data for all patients at both hospitals, as well as from 10 additional health systems, which were successfully aggregated with pharmacy data obtained for patients using CVS or Walgreens pharmacies, personal digital device data from activity monitors, digital weight scales, and single-lead ECGs, and patient-reported outcome measure data obtained through surveys to assess post-procedure recovery and disease-specific symptoms. A patient-centered health data sharing platform successfully aggregated data from multiple sources.

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