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

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          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.

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          Author and article information

          Contributors
          Journal
          Mayo Clin Proc
          Mayo Clin. Proc
          Mayo Clinic Proceedings
          Mayo Foundation
          0025-6196
          1942-5546
          December 2012
          : 87
          : 12
          : 1202-1213
          Affiliations
          [a ]Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, Rochester, MN
          [b ]Division of Biomedical Statistics and Informatics, Department of Health Sciences Research, Mayo Clinic, Rochester, MN
          [c ]Department of Neurology, Mayo Clinic, Rochester, MN
          [d ]Department of Research, Olmsted Medical Center, Rochester, MN
          Author notes
          [* ] Correspondence: Address to Walter A. Rocca, MD, MPH, Division of Epidemiology, Department of Health Sciences Research, Mayo Clinic, 200 First St SW, Rochester, MN 55905 rocca@ 123456mayo.edu
          Article
          PMC3541925 PMC3541925 3541925 JMCP242
          10.1016/j.mayocp.2012.08.012
          3541925
          23199802
          2f360e59-05bc-462d-8177-be2f3cc017a6
          © 2012 Published by Elsevier Inc. on behalf of Mayo Foundation for Medical Education and Research.
          Categories
          Review

          ICD, International Classification of Diseases ,NIH, National Institutes of Health,IRB, institutional review board,HIPAA, Health Insurance Portability and Accountability Act,REP, Rochester Epidemiology Project

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