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

• Published in: Mayo Clinic proceedings Vol. 87; no. 12; pp. 1202 - 1213
• Main Authors: Rocca, Walter A., MD, MPH, Yawn, Barbara P., MD, MSc, St. Sauver, Jennifer L., PhD, MPH, Grossardt, Brandon R., MS, Melton, L. Joseph, MD, MPH
• Format: Journal Article
• Language: English
• Published: Rochester, MN Elsevier Inc 01.12.2012; Mayo Foundation; Elsevier, Inc; Elsevier Limited
• Subjects: Abstracting and Indexing as Topic - history; Berkson, Joseph; Biological and medical sciences; Book publishing; Confidentiality; Epidemiology; Epidemiology - history; General aspects; History, 20th Century; History, 21st Century; Humans; Internal Medicine; Medical centers; Medical Record Linkage; Medical Records Systems, Computerized; Medical sciences; Minnesota - epidemiology; Miscellaneous; Plummer, Henry; Public health. Hygiene; Public health. Hygiene-occupational medicine; Reproducibility of Results; Research Personnel; Research Support as Topic; Review; United States; North America; America; Minnesota; United Kingdom; International Classification of Diseases; Rochester Epidemiology Project; HIPAA; IRB; ICD; National Institutes of Health; NIH; REP; Health Insurance Portability and Accountability Act; institutional review board; Medical data; Medicine; Project; Medical record; History; Epidemiology; Case history; Public health
• ISSN: 0025-6196; 1942-5546
• DOI: 10.1016/j.mayocp.2012.08.012

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.