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

eGEMs (Generating Evidence & Methods to improve patient outcomes) · 2019 · 80 citations · 11 references

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TL;DR

Over the past two decades, health care research has adopted a steady stream of common data models that provide uniform interfaces across diverse organizations, enabling tool and data sharing, and revealing striking similarities despite differing origins and evolving data, thereby allowing researchers to assess the field’s past, present, and future utility. This paper traces the evolution of common data models, describing their similarities and points of departure. We trace this evolution by documenting the models’ similarities and differences, preserving the history of this work. The work has empowered collaborative research across competing organizations and brought together researchers from clinical practice, universities, and research institutes worldwide.

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.

References

11