Two eastern Iowa public health agencies are tussling over data about Linn County cancer patients, with both sides saying they know what is best for residents.
The Linn County Public Health Department wants access to individual-level data about Linn County cancer patients so officials can see if there might be environmental factors causing the county to have a higher rate of cancer deaths than the state as a whole.
University of Iowa officials who have collected state cancer statistics for 40 years are reluctant to give out detailed health information about cancer patients without knowing how the data would be used.
“I’m not certain the people of Linn County who have been diagnosed with cancer want the county public health department to know that,” said Dr. Charles Lynch, a UI epidemiology professor and principal investigator for the State Health Registry of Iowa.
Linn County Public Health Director Pramod Dwivedi, hired in 2012, started seeking detailed information about residents diagnosed with cancer last year 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 wants are the addresses of individual Linn County residents who have been diagnosed with cancer. The Cancer Registry collects this data from hospitals and pathology labs that test for the disease.
Linn County epidemiologist Kaitlin Emrich and other staff could analyze the data and observe trends over time, said Linda Langston, a Linn County supervisor and public health board member. If there are environmental factors, such as an unauthorized dump site or tainted ground water, the county could work to fix the problems.
“We’re not interested in names, but to understand clusters, we need to have addresses,” Langston said.
County officials were concerned they had not been involved in a recent investigation into whether there was a cancer cluster in Mount Vernon. Lynch and his team compared cancer types in Mount Vernon to those in Lisbon and Grinnell, KCRG-TV9 reported last month. The group determined there was not a cancer cluster.
Linn County doesn’t need patient addresses to examine environmental factors, Lynch said. They could request the cancer data by block or zip code, which would provide a general location of where patients live without addresses, which can be used to determine names, he said.
“That is highly-protected data,” Lynch said. “And they have not provided me a highly-exceptional reason for why they need it.”
Kris Sargent, a nurse who leads a cancer support group for the Hall-Perrine Cancer Center, said she understands the benefits of studying cancer clusters, but doesn’t think patients want to be identified by address.
“Some people are very private about this information,” she said.
When Linn County first started asking for the cancer data in February 2013, Lynch recommended 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.
“I understand you feel strongly that it is Linn Co. data, but maybe when you have the initial conversation… try to meet in the middle,” Running-Marquardt wrote in a Nov. 12 email to Dwivedi and Langston. “I asked the U of I to do this as well when looking on ways to share this important data.”
Dwivedi and Lynch didn’t seem ready to compromise last week.
“I’ve worked in many places and I’ve never seen this,” Dwivedi said. “With the UI, it’s been a mind-boggling struggle.”
Lynch said the state has never wanted access to cancer registry data until Dwivedi’s arrival.
“What they really want is to have a dataset they can query for all sorts of different questions,” Lynch said. “For some reason, they feel like they are entitled.”
No other county in the state has asked for this level of detail in cancer statistics, said Gerd Clabaugh, interim director of the Iowa Department of Public Health. But that doesn’t mean Linn County shouldn’t have access to the data, which is owned by the state health department, he said.
Linn County signed a data-sharing agreement with the state last year. The state is working on an amendment that would include the cancer registry data now held by the UI. As part of the agreement, Linn County officials would have to show they have protocols and security systems in place to protect the data.
Clabaugh said he has not spoken directly with Lynch about transferring the cancer registry data to the state, but hopes it will go smoothly. Linn County has no plans to sue for the data. Lynch said the issue is not yet resolved.“It’s going to involve the state’s legal counsel and our legal counsel,” he said.