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

doi:10.1038/s41746-020-0265-z

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

Sanket S. Dhruva, Joseph S. Ross (Lead / Corresponding author), 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

Population Health and Genomics

Research output: Contribution to journal › Article › peer-review

49 Citations (Scopus)

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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 language	English
Article number	60
Number of pages	9
Journal	npj Digital Medicine
Volume	3
DOIs	https://doi.org/10.1038/s41746-020-0265-z
Publication status	Published - 20 Apr 2020

Keywords

Data acquisition
Data integration

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10.1038/s41746-020-0265-zLicence: CC BY

Final published versionFinal published version, 1 MBLicence: CC BY

49 Citations
1 Preprint

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
Dhruva, S. S., Ross, J. S. (Lead / Corresponding author), 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., 2 Nov 2019, medRxiv, 31 p.
Research output: Working paper/Preprint › Preprint

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, Article 60. https://doi.org/10.1038/s41746-020-0265-z

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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.",

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Dhruva, SS, Ross, JS, Akar, JG, Caldwell, B, Childers, K, Chow, W, Ciaccio, L, Coplan, P, Dong, J, Dykhoff, HJ, Johnston, S, Kellogg, T, Long, C, Noseworthy, PA, Roberts, K, Saha, A, Yoo, A & Shah, ND 2020, 'Aggregating multiple real-world data sources using a patient-centered health-data-sharing platform', npj Digital Medicine, vol. 3, 60. https://doi.org/10.1038/s41746-020-0265-z

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T1 - Aggregating multiple real-world data sources using a patient-centered health-data-sharing platform

AU - Dhruva, Sanket S.

AU - Ross, Joseph S.

AU - Akar, Joseph G.

AU - Caldwell, Brittany

AU - Childers, Karla

AU - Chow, Wing

AU - Ciaccio, Laura

AU - Coplan, Paul

AU - Dong, Jun

AU - Dykhoff, Hayley J.

AU - Johnston, Stephen

AU - Kellogg, Todd

AU - Long, Cynthia

AU - Noseworthy, Peter A.

AU - Roberts, Kurt

AU - Saha, Anindita

AU - Yoo, Andrew

AU - Shah, Nilay D.

PY - 2020/4/20

Y1 - 2020/4/20

N2 - 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.

AB - 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.

KW - Data acquisition

KW - Data integration

U2 - 10.1038/s41746-020-0265-z

DO - 10.1038/s41746-020-0265-z

M3 - Article

SN - 2398-6352

VL - 3

JO - npj Digital Medicine

JF - npj Digital Medicine

M1 - 60

ER -

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

Abstract

Keywords

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Research output

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

Cite this