History of the Rochester epidemiology project: Half a century of medical records linkage in a US population

Walter A Rocca, Barbara P. Yawn, Jennifer St. Sauver, Brandon R. Grossardt, L. Joseph Melton

Research output: Contribution to journalArticle

379 Citations (Scopus)

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.

Original languageEnglish (US)
Pages (from-to)1202-1213
Number of pages12
JournalMayo Clinic Proceedings
Volume87
Issue number12
DOIs
StatePublished - Dec 2012

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Medical Record Linkage
Epidemiology
Population
Research
Confidentiality
National Institutes of Health (U.S.)
Public Policy
Information Systems
Reproducibility of Results
Health Personnel
Medical Records
Technology
Physicians

ASJC Scopus subject areas

  • Medicine(all)

Cite this

History of the Rochester epidemiology project : Half a century of medical records linkage in a US population. / Rocca, Walter A; Yawn, Barbara P.; St. Sauver, Jennifer; Grossardt, Brandon R.; Melton, L. Joseph.

In: Mayo Clinic Proceedings, Vol. 87, No. 12, 12.2012, p. 1202-1213.

Research output: Contribution to journalArticle

Rocca, Walter A ; Yawn, Barbara P. ; St. Sauver, Jennifer ; Grossardt, Brandon R. ; Melton, L. Joseph. / History of the Rochester epidemiology project : Half a century of medical records linkage in a US population. In: Mayo Clinic Proceedings. 2012 ; Vol. 87, No. 12. pp. 1202-1213.
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