Aggregating multiple real-world data sources using a patient-centered health-data-sharing platform

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

Research output: Contribution to journalArticle

Abstract

Real-world data sources, including electronic health records (EHRs) 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 ten 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.

Original languageEnglish (US)
Article number60
Journalnpj Digital Medicine
Volume3
Issue number1
DOIs
StatePublished - Dec 1 2020

ASJC Scopus subject areas

  • Medicine (miscellaneous)
  • Health Informatics
  • Health Information Management
  • Computer Science Applications

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  • Cite this

    Dhruva, S. S., Ross, J. S., Akar, J. G., Caldwell, B., Childers, K., Chow, W., Ciaccio, L., Coplan, P., Dong, J., Dykhoff, H. J., Johnston, S., Kellogg, T., Long, C., Noseworthy, P. A., Roberts, K., Saha, A., Yoo, A., & Shah, N. D. (2020). Aggregating multiple real-world data sources using a patient-centered health-data-sharing platform. npj Digital Medicine, 3(1), [60]. https://doi.org/10.1038/s41746-020-0265-z