Linn County finally gets data to look for cancer clusters

CEDAR RAPIDS - Linn County Public Health has finally gotten access to Iowa Cancer Registry data to study possible cancer clusters after more than two years of tussling with the University of Iowa.

Public Health Director Pramod Dwivedi signed an amendment to a data-sharing agreement June 22 with the Iowa Department of Public Health to access cancer and hospital discharge data from the registry, he said.

'We plan to do a geospatial analysis - meaning what areas within our county have higher incidence of overall cancer and specific type of cancer compared to other areas,” Dwivedi said. 'We also plan to link cancer registry data with the death certificate data to also assess the death and survivability.”

Dwivedi, hired in 2012, started seeking detailed cancer data in 2013 after learning cancer was the leading cause of death in Linn County. Heart disease is the No. 1 killer in Iowa overall, although cancer is a close second.

Among the information Linn County wanted were addresses of individual Linn County residents who have been diagnosed with cancer. The UI, which runs the Iowa Cancer Registry for the state, collects this data from hospitals and pathology labs that test for cancer. The registry is funded by the National Cancer Institute and the UI.

UI officials initially had concerns about how Linn County would use address-specific data and whether patients' privacy would be protected.

Dr. Charles Lynch, a UI epidemiology professor and principal investigator for the State Health Registry of Iowa, suggested Dwivedi apply for use of the information as part of a research request that would go through the UI's Institutional Review Board.

Dwivedi said the county didn't want a one-time data dump, but ongoing access to the cancer statistics for public health surveillance. He took his concerns to several state lawmakers, including Rep. Kirsten Running-Marquardt, D-Cedar Rapids.

The Iowa Attorney General and UI General Counsel's Office haggled over drafts of the data-use amendment for months before the agreement was reached in June.