Learning to Share Health Care Data: A Brief Timeline of Influential Common Data Models and Distributed Health Data Networks in U.S. Health Care Research.

John Weeks,Roy Pardee

doi:10.5334/egems.279

Abstract

The last twenty years of health care research has seen a steady stream of common health care data models implemented for multi-organization research. Each model offers a uniform interface on data from the diverse organizations that implement them, enabling the sharing of research tools and data. While the groups designing the models have had various needs and aims, and the data available has changed significantly in this time, there are nevertheless striking similarities between them. This paper traces the evolution of common data models, describing their similarities and points of departure.We believe the history of this work should be understood and preserved. The work has empowered collaborative research across competing organizations and brought together researchers from clinical practice, universities and research institutes around the planet. Understanding the eco-system of data models designed for collaborative research allows readers to evaluate where we have been, where we are going as a field, and to evaluate the utility of different models to their own work.

Highlights

A Common Data Model (CDM) is an important part of multi-organization collaborative research
The models selected here are not a complete list of every shared data resource used in health care research; these models represent the clear majority of shared data resources in the U.S health care system
A key benefit of Health Care Systems Research Network (HCSRN) membership to VDW implementers is access to a variety of quality assurance scripts that call attention to certain violations of the model, as well as possible violations. These scripts are themselves curated by HCSRN along with a process of periodic human review and cross-site comparison, all aimed at ensuring common interpretation/implementation of the CDM, so users can be assured that the data mean the same thing across sites

Summary

John Weeks and Roy Pardee

The last twenty years of health care research has seen a steady stream of common health care data models implemented for multi-organization research. Each model offers a uniform interface on data from the diverse organizations that implement them, enabling the sharing of research tools and data. While the groups designing the models have had various needs and aims, and the data available has changed significantly in this time, there are striking similarities between them. This paper traces the evolution of common data models, describing their similarities and points of departure. Understanding the eco-system of data models designed for collaborative research allows readers to evaluate where we have been, where we are going as a field, and to evaluate the utility of different models to their own work

Introduction

Utilization Enrollment Vaccines

Vital Signs

Location Measurement Death

Conclusion