By Trevor Graff
KHI News Service

TOPEKA — The Senate Judiciary Committee has endorsed a bill that would allow the disclosure of child mortality data to universities, researchers, non-profits and governmental agencies.

Senate Bill 259 would let the State Child Death Review Board release information concerning child deaths for research and public health purposes. The information would not give any information that could be used to identify individuals.

Supporters said the information could be valuable for research that could help reduce the incidence of infant deaths.
“This is a simple change to the law that would allow the existing data to be used in certain circumstances to find targeted interventions to prevent deaths,” said Christie Appelhanz, vice president of public affairs at Kansas Action for Children, a Topeka-based advocacy group.

The State Child Death Review Board investigates the death of every child age 17 or younger who is a Kansas resident or dies in Kansas. The board has reviewed more than 8,700 deaths since it was authorized by the Legislature in 1992.

Infant deaths in Kansas increased from 247 in 2011 to 254 in 2012, according to the most recent Kansas Department of Health and Environment data. The state’s infant mortality rate of 6.3 per 1,000 live births puts the state above the national average.

According to the review board’s annual report, 391 Kansas children died in 2011.

“We have an incredibly high infant mortality rate in Kansas and we don’t have all of the answers as to why that’s the case,” Appelhanz said. “We think that with the data that comes form the Child Death Review Board we can start to figure out some of the reasons for this and prevent them through targeted community intervention.”

Those granted access to the information would be required to sign confidentiality agreements The Review Board would still have the discretion to share or keep the information.

Legislative budget analysts estimated there would be no cost to the proposal.

“The review board is already collecting this information,” Appelhanz said. “This simply allows it to be used by researchers so it doesn’t cost the state anything.”

Senator Mary Pilcher-Cook, a Shawnee Republican, offered an amendment to the bill that would require the review board to note all requests for access to the data and the purpose of the requests in its annual report to the Legislature. Her amendment was approved on a voice vote.

With the committee’s endorsement the bill can now move to the full Senate for consideration.

“I’m pleased to see that things are moving forward,” Appelhanz said. ”We have children dying in Kansas at a rate that’s higher than the national average and this is one step toward preventing those deaths.”

A companion bill in the House, HB 2767, was referred to the House Judiciary Committee but hasn’t had a hearing yet.