Delays in data requests slow down Nebraska cancer research

But state Sen. Brad von Gillan of Omaha told his colleagues at Thursday’s hearing that researchers have recently faced months or even years of delays and delays in requesting enrollment data from the Nebraska Department of Health and Human Services. He said he is facing a lack of answers.

Von Gillern’s bill, 1172, would require government agencies to respond to requests for cancer registry data within eight weeks. Lawmakers created the cancer registry in 1982.

Delays in access to data not only hinder advances in cancer research, but also prevent researchers from applying for grants from the National Institutes of Health, which are the backbone of research funding, he said.

Von Gillen said, “The reasons have not been made clear…why does this lag exist when in the past this has clearly not been an issue?” It emphasized that it does not contain any information that can be used for “Whatever the reason, we just need to figure this out, get over the plateau and get the research enterprise back on track.”

Department officials did not speak at the hearing. But in an emailed statement Friday, they said they respond to surveys and data requests within an average of a week with the information available at the time, including diagnoses. Ta.

But comprehensive data may not be available at that time, they wrote. State regulations give health care providers up to six months to report a cancer diagnosis. The agency will then follow each case for 23 months, following Centers for Disease Control and Prevention data collection standards, during which time it will communicate with each case’s health care provider to collect treatment information. At the end of the 23-month period, the department analyzes and incorporates other important statistical information to complete the record.

Officials also noted that personal information has not been removed from public health registries. When the department receives a request for de-identified information, staff collect the requested information and work with the requester to provide meaningful information while ensuring that personally identifiable information is removed. Masu.

Leaders at two cancer centers in Omaha also emphasized the need for timely access to data.

Dr. Joanne Sweezy, the new director of the Fred and Pamela Buffett Cancer Center, said her staff plans to apply for designation as a National Cancer Institute Comprehensive Cancer Center in the near future. Buffett Cancer Center is currently one of his 72 NCI-designated cancer centers across the country, and the only one in Nebraska.

To advance to the next level, the center must meet the highest standards in the country for cancer research and treatment, she said.

“To achieve comprehensive status that will best benefit Nebraskans, we need to access and analyze the cancer data that Nebraska collects,” said Sweezy, who started in November. Ta.

Mr. Sweezy previously served as director of the University of Arizona Cancer Center in Tucson, Arizona. She led the Arizona center to renew its Comprehensive Cancer Center designation and served on the subcommittee that reviewed NCI Cancer Centers.

For the past few months, researchers have been requesting the data but have not yet received it, she said. Without timely access to data, cancer centers cannot develop optimally informed strategies for cancer research and treatment.

The lack of data would also make it difficult to recruit and retain the expertise needed to apply for comprehensive status, jeopardizing the center’s ability to obtain comprehensive status, she said. Universities with designated centers control a significant portion of cancer research funding in the United States.

Dr. Laura Hansen, associate dean for research at Creighton University and director of the Lynch Cancer Research Center, said access to data is important for researchers at the center and within the Creighton University Population Health Institute.

The cancer research center is named after the late Dr. Henry Lynch, internationally known as the founder of hereditary cancer research. “Creighton University now has a new generation of cancer geneticists who are continuing Dr. Lynch’s work,” she said.

Dr. Don Coulter, director of the Pediatric Cancer Research Group, an umbrella group for pediatric cancer research at Children’s Nebraska and the University of Nebraska Medical Center, said delays sometimes prevent studies from being completed.

Instead, he said, some researchers used data from other states and extrapolated it to Nebraska’s population. Researchers within the group are currently making some requests for data he submitted more than a year ago.

According to the CDC, Nebraska currently has the seventh highest rate of childhood cancer in the country. The state Legislature began funding the research group in 2014. Since then, researchers have focused on strategies to improve the epidemiology of childhood cancer in the state and long-term outcomes for survivors.

Coulter said accessing this data will allow researchers to compare Nebraska’s information with information from neighboring states that are already collaborating.

Amanda McGill Johnson, executive director of Nebraska Cures, noted that concerns about timely access to data extend beyond cancer registries. The organization, which supports health science research, has also heard concerns from researchers facing challenges obtaining data on vital statistics, maternal and child health, and Parkinson’s disease.

She said the organization prioritized cancer in presenting the proposed measures to von Gillen. But the organization also wants to work with lawmakers on other data that could lead to improved health outcomes for Nebraskans.

He noted that some states have more up-to-date data available to the public than Nebraska. In recent years, many companies have updated their data processes.