A health-care milestone that should make Minnesotans proud

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.