The 50th anniversary of a medical-records database sounds like a milestone only a health-care wonk could celebrate. The reality: The enduring contributions of the Rochester Epidemiology Project should make all Minnesotans proud.
The vision of the REP's founder, Dr. Leonard T. Kurland of the Mayo Clinic, is an important but underappreciated reason that Minnesota has long been a world-class center for medical research and care. Long before the term "data mining" was coined, Kurland saw the public health potential of the comprehensive, well-organized medical records kept for people living in southeast Minnesota's Olmsted County. His employer cared for many of the county's residents over their lifetimes. So did other smaller, nearby providers. Kurland realized that information in these records could provide critical insights into population health.
While traditional medical studies focus on shorter-term outcomes — such as the effect of a certain treatment — the trove of information in these southeast Minnesota medical records instead provides longer-term answers to questions about disease risk, frequency, prevention and treatment. This information storehouse became a reality thanks to the collaboration of Mayo and area medical providers, and has been funded by the National Institutes of Health since 1966.
Participation in the REP is voluntary, of course, and patient information is kept confidential. It's by "accumulating, linking and analyzing" key information in these records that insights are yielded. Today, data mining like this from other sources is a technique wielded by industry to glean information about consumer purchasing habits, for example. But in 1966, this was a truly farsighted strategy. "The REP was 'Big Data' before Big Data was cool!'' as the REP's website puts it.
The REP has made significant contributions to the world of medicine. Researchers drawing upon it have contributed more than 2,600 times to the publications that disseminate the latest medical knowledge. Among important insights: that head injuries early in life can increase the risk of Parkinson's disease or dementia. And, that removing ovaries in many women to prevent ovarian cancer may have more risks than benefits. Other contributions include identifying Alzheimer's disease risk factors.
Today, the REP is the data source for more than 20 federally funded long-term research initiatives, which means its insights will influence medicine long into the future. The REP has grown over the years to include medical records from 27 counties in Minnesota and Wisconsin. There are now more 1 million medical records in it, making it "unmatched in ... depth and breadth of information about a single population,'' said Dr. Walter Rocca, one of the REP's co-directors.
The regional patients who have allowed the project to utilize their data also merit praise. They may not have realized it when they said "yes," but they are making a significant contribution to the health of generations to come.