History of the Rochester Epidemiology Project: Half a Century of Medical Records Linkage in a US Population

doi:10.1016/j.mayocp.2012.08.012

Mayo Clinic Proceedings

Volume 87, Issue 12, December 2012, Pages 1202-1213

https://doi.org/10.1016/j.mayocp.2012.08.012 Get rights and content

Abstract

The Rochester Epidemiology Project (REP) has maintained a comprehensive medical records linkage system for nearly half a century for almost all persons residing in Olmsted County, Minnesota. Herein, we provide a brief history of the REP before and after 1966, the year in which the REP was officially established. The key protagonists before 1966 were Henry Plummer, Mabel Root, and Joseph Berkson, who developed a medical records linkage system at Mayo Clinic. In 1966, Leonard Kurland established collaborative agreements with other local health care providers (hospitals, physician groups, and clinics [primarily Olmsted Medical Center]) to develop a medical records linkage system that covered the entire population of Olmsted County, and he obtained funding from the National Institutes of Health to support the new system. In 1997, L. Joseph Melton III addressed emerging concerns about the confidentiality of medical record information by introducing a broad patient research authorization as per Minnesota state law. We describe how the key protagonists of the REP have responded to challenges posed by evolving medical knowledge, information technology, and public expectation and policy. In addition, we provide a general description of the system; discuss issues of data quality, reliability, and validity; describe the research team structure; provide information about funding; and compare the REP with other medical information systems. The REP can serve as a model for the development of similar research infrastructures in the United States and worldwide.

Section snippets

Early Ledgers of the Mayo Clinic Practice

Establishment of the REP in 1966 was made possible by a chain of events and technical developments that took place at Mayo Clinic, the founding institution, during the first half of the 1900s. Details about the early history of Mayo Clinic and about the development of a records linkage system at Mayo Clinic have been reported more extensively elsewhere.10, 11 Herein, we provide a brief synopsis of the key events and protagonists narrated from today's perspective.

Mayo Clinic was founded in the

Creation of a Medical Records Linkage System for Olmsted County

Stimulated by the publication of a study on the incidence of multiple sclerosis in Olmsted County,⁹ Leonard T. Kurland came to Mayo Clinic for a fellowship in neurology and returned a decade later to become head of what is now called the Department of Health Sciences Research (Figure 3, A).²⁴ Kurland was trained in neurology and epidemiology, and he was the first to more fully exploit the unique potential of the Mayo Clinic records archive for generating accurate frequency and natural history

General Description

The medical records linkage system of the REP now encompasses 6,239,353 person-years of follow-up for a total of 502,820 unique individuals attended at least once between 1966 and 2010 (counting both current and previous residents). The REP does not collect and store data following a specified format as typically used in a cohort study (eg, the Framingham Heart Study) or in cross-sectional surveys (eg, the National Health and Nutrition Examination Survey).35, 36 Medical information is recorded

Conclusion

The REP medical records linkage system has existed for almost half a century and was made possible by approximately another half century of local developments at Mayo Clinic, the founding institution. Because of this long and complex history, its coverage of an entire population, its geographic location, and its scientific productivity, the REP is unique in the United States. Studies supported by the REP have contributed to transforming medical practices in Olmsted County and worldwide and to

Acknowledgments

We thank Lori Klein for typing and formatting the manuscript and Mary G. Roberts for other support. The content of this article is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

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: Grant Support: This study was made possible by the Rochester Epidemiology Project (grant number R01-AG034676; Principal Investigators: Walter A. Rocca, MD, MPH, and Barbara P. Yawn, MD, MSc).

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ReviewHistory of the Rochester Epidemiology Project: Half a Century of Medical Records Linkage in a US Population

Abstract

Section snippets

Early Ledgers of the Mayo Clinic Practice

Creation of a Medical Records Linkage System for Olmsted County

General Description

Conclusion

Acknowledgments

Mayo Clin Proc

Mayo Clin Proc

Mayo Clin Proc

J Chronic Dis

J Chronic Dis

Mayo Clin Proc

Lancet

Aust N Z J Public Health

Soc Sci Med

Eras in Epidemiology: The Evolution of Ideas

Handbook of Record Linkage: Methods for Health and Statistical Studies, Administration, and Business

Record linkage

Am J Public Health Nations Health

A Dictionary of Epidemiology

Use of a medical records linkage system to enumerate a dynamic population over time: the Rochester Epidemiology Project

Am J Epidemiol

Mortality, disability and permanency of cure in surgery

Northwestern Lancet

Multiple sclerosis in a rural community

Res Publ Assoc Res Nerv Ment Dis

The patient record in epidemiology

Sci Am

The Doctors Mayo

A Standard Classified Nomenclature of Disease

Obituaries: Joseph Berkson 1899-1982

Biometrics

A system of codification of medical diagnoses for application to punch cards, with a plan of operation

Am J Public Health Nations Health

A History of Epidemiologic Methods and Concepts

Causal Thinking in the Health Sciences: Concepts and Strategies of Epidemiology

Review
History of the Rochester Epidemiology Project: Half a Century of Medical Records Linkage in a US Population