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Marsolo K, Margolis PA, Forrest CB, et al. A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research. EGEMS (Wash DC). 2015;3(1):1168doi: 10.13063/2327-9214.1168.
Marsolo, K., Margolis, P. A., Forrest, C. B., Colletti, R. B., & Hutton, J. J. (2015). A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research. EGEMS (Washington, DC), 3(1), 1168. https://doi.org/10.13063/2327-9214.1168
Marsolo, Keith, et al. "A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research." EGEMS (Washington, DC) vol. 3,1 (2015): 1168. doi: https://doi.org/10.13063/2327-9214.1168
Marsolo K, Margolis PA, Forrest CB, Colletti RB, Hutton JJ. A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research. EGEMS (Wash DC). 2015 Aug 17;3(1):1168. doi: 10.13063/2327-9214.1168. eCollection 2015. PMID: 26357665; PMCID: PMC4562738.
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EGEMS (Wash DC). 2015 Aug 17;3(1):1168. doi: 10.13063/2327-9214.1168. eCollection 2015.

A Digital Architecture for a Network-Based Learning Health System: Integrating Chronic Care Management, Quality Improvement, and Research.

EGEMS (Washington, DC)

Keith Marsolo, Peter A Margolis, Christopher B Forrest, Richard B Colletti, John J Hutton

Affiliations

  1. Cincinnati Children's Hospital Medical Center.
  2. Children's Hospital of Philadelphia.
  3. University of Vermont.

PMID: 26357665 PMCID: PMC4562738 DOI: 10.13063/2327-9214.1168

Abstract

INTRODUCTION: We collaborated with the ImproveCareNow Network to create a proof-of-concept architecture for a network-based Learning Health System. This collaboration involved transitioning an existing registry to one that is linked to the electronic health record (EHR), enabling a "data in once" strategy. We sought to automate a series of reports that support care improvement while also demonstrating the use of observational registry data for comparative effectiveness research.

DESCRIPTION OF ARCHITECTURE: We worked with three leading EHR vendors to create EHR-based data collection forms. We automated many of ImproveCareNow's analytic reports and developed an application for storing protected health information and tracking patient consent. Finally, we deployed a cohort identification tool to support feasibility studies and hypothesis generation. There is ongoing uptake of the system. To date, 31 centers have adopted the EHR-based forms and 21 centers are uploading data to the registry. Usage of the automated reports remains high and investigators have used the cohort identification tools to respond to several clinical trial requests.

SUGGESTIONS FOR FUTURE USE: The current process for creating EHR-based data collection forms requires groups to work individually with each vendor. A vendor-agnostic model would allow for more rapid uptake. We believe that interfacing network-based registries with the EHR would allow them to serve as a source of decision support. Additional standards are needed in order for this vision to be achieved, however.

CONCLUSIONS: We have successfully implemented a proof-of-concept Learning Health System while providing a foundation on which others can build. We have also highlighted opportunities where sponsors could help accelerate progress.

Keywords: electronic health records; learning health system; learning networks; registries

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