title: History of the Rochester Epidemiology Project: half a century of medical records linkage in a US population.
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.
authors.affiliation: Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN 55905, USA. rocca@mayo.edu
authors.forename: Walter A
authors.initials: WA
authors.lastname: Rocca
authors.forename: Barbara P
authors.initials: BP
authors.lastname: Yawn
authors.forename: Jennifer L
authors.initials: JL
authors.lastname: St Sauver
authors.forename: Brandon R
authors.initials: BR
authors.lastname: Grossardt
authors.forename: L Joseph
authors.initials: LJ
authors.lastname: Melton
mesh_terms: D000043:Abstracting and Indexing / Q000266:history; D003219:Confidentiality; D004813:Epidemiology / Q000266:history*; D049673:History, 20th Century; D049674:History, 21st Century; D006801:Humans; D008498:Medical Record Linkage; D016347:Medical Records Systems, Computerized; D008910:Minnesota / Q000453:epidemiology; D015203:Reproducibility of Results; D012108:Research Personnel; D012109:Research Support as Topic