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Project expands reach to help improve medical care

Regional program combines medical information from hundreds of thousands with goal of improving health care, advancing research

posted Aug. 20, 2016 12:00 a.m. (CDT)
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by / Christena T. O’Brien

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    Staff photo by Dan Reiland | Enlarge
    - Carling McLaughlin of Chippewa Falls plays with daughters Clara, 7 months, and Rosie, 3, Friday at Owen Park in Eau Claire. Eight counties in western Wisconsin, including Eau Claire, Chippewa and Dunn, now are included in the Rochester Epidemiology Project, which links and archives medical records for research to help determine the delivery of care to families and address long-standing medical issues. View a photo gallery at LeaderTelegram.com.
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  • Dr. Walter Rocca
    Rocca

Since its inception in 1966, the Rochester Epidemiology Project has laid the foundation for hundreds of research studies to try and answer questions about health care issues.

The project — a collaboration of clinics, hospitals and other medical and dental organizations — links and archives medical records of persons living in a defined region — portions of Minnesota and western Wisconsin—to facilitate medical research.

Launched in Olmsted County, Minn., the project has followed a half-million lives since it began. It has been expanded over the years, first from one to eight counties in Minnesota and later to 19 counties in the Gopher State and eight in the Badger State, including Eau Claire, Dunn and Chippewa.

“The newly expanded REP, including the 27-county region, is ‘under construction,’ but we are very excited for the future opportunities for research and discovery,” said Dr. Walter Rocca, a Mayo Clinic neurologist, researcher and co-director of the project, first in collaboration with Dr. Barbara Yawn of Olmsted Medical Center and now with Dr. Jennifer St. Sauver of Mayo Clinic.

“The expansion will allow the REP to address medical questions about more rare conditions, (such as) ovarian cancer, pancreatic cancer, and for special subgroups of the population, (like) boys 10 to 19 years old or elderly women 80 to 89 years old,” Rocca said Friday via email. “In addition, the broader region will increase the generalizability of the findings to a larger segment of the Midwest and will include a large rural population.”

The other Wisconsin counties included in the project are Barron, Buffalo, La Crosse, Pepin and Trempealeau.

While she hadn’t heard of the project, Dunn County health director Wendy MacDougall said, “Quality research is essential to public health.”

That said, MacDougall stressed she thought it “was important that the process for giving consent (to the use of patients’ records) is followed.”

Members of the community receiving health care services for the first time are asked if they will allow their medical records to be used for research, according to project literature, and all medical information in the project is safe and protected.

“Information from any particular patient is combined with information from many other patients, so it becomes impossible to tell which persons are included in the study,” according to a project brochure. “However, that combined information is priceless for medical research.”

Researchers are hoping residents in west-central Wisconsin “will say yes when asked and become part of the REP community.”

“A person will be included in the REP if he/​she resides in one of the (eight) counties of Wisconsin … ” Rocca said. “The REP is based on residency in a region, not on location of the care provider.”

Dr. Jon Ebbert, an internal medicine physician at Mayo Clinic in Rochester and an REP investigator, supports the project.

“This data allows us to compare outcomes across different regions and, by correlating this information with practice patterns, we can optimize the way we deliver care,” he said.

Since its inception, more than 2,600 publications have sprung project data, including:

• A project study published in 2012 showed children who receive general anesthesia before age 2 are at increased risk for the later development of attention-deficit hyperactivity disorder. The study led to new guidelines recommending the delay of surgical procedures that require general anesthesia in small children, if possible.

• Studies using project data showed head trauma could lead to dementia, epilepsy and Parkinson’s disease — sometimes decades after the injury. This knowledge is guiding research on interventions that may break the link between trauma and damage to the brain.

• A project study showed the risk of breaking a hipbone increases with age, and people who break their hip are at increased risk of dying.

• A series of studies using the project have shown that for the majority of women who do not have a high genetic risk of ovarian cancer, removing the ovaries before reaching menopause is more harmful than preventive. These studies have changed the practice of ovarian surgery globally.

Other research is continuing. “One study is currently looking at patients with congestive heart failure in the 27-county region,” said Rocca, who has used the project for 23 years. “We have also extracted all of the residents with specific types of cancer in the 27-county region.”

For now, project leaders don’t plan to go beyond the 27 counties, which Rocca calls “a good target.”

“The total region will include more than 1 million residents, and we already cover 64 percent of the population,” he said. “In coming years, we will work to increase coverage of the population and to start using the data to address important medical questions.”

Contact: 715-830-5838, christena.obrien@ecpc.om, @CTOBrien on Twitter

• For more information about the Rochester Epidemiology Project, go to rochesterproject.org.