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

被引:672
作者
Rocca, Walter A. [1 ,3 ]
Yawn, Barbara P. [1 ,4 ]
St Sauver, Jennifer L. [1 ]
Grossardt, Brandon R. [2 ]
Melton, L. Joseph, III [1 ]
机构
[1] Mayo Clin, Dept Hlth Sci Res, Div Epidemiol, Rochester, MN 55905 USA
[2] Mayo Clin, Dept Hlth Sci Res, Div Biomed Stat & Informat, Rochester, MN 55905 USA
[3] Mayo Clin, Dept Neurol, Rochester, MN 55905 USA
[4] Olmsted Med Ctr, Dept Res, Rochester, MN USA
关键词
BIAS; DISEASE; AUTHORIZATION; SELECTION; DATABASE; SYSTEM;
D O I
10.1016/j.mayocp.2012.08.012
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
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. (C) 2012 Mayo Foundation for Medical Education and Research square Mayo Clin Proc. 2012; 87(12): 1202-1213
引用
收藏
页码:1202 / 1213
页数:12
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