The Centers for Disease Control and Prevention has asked all states to sign a data use agreement to provide information during the vaccine rollout. The agency has promised the data will only be used to help administer vaccines, which require two doses.
But Kansas is among a group of states and health associations that have raised concerns that sharing the data could dissuade some residents from getting vaccinated.
Lee Norman, director of the Kansas Department of Health and Environment, on Wednesday expressed reservations about providing the data. He said some people are a "little paranoid" about how the data would be used, so state officials aren't planning to share it.
"We're very reluctant to share that kind of data because we are concerned that sharing identifiable information will decrease the uptake of the vaccine," Norman said at a Wednesday news conference.
In addition to Kansas, officials in New York, California, Minnesota and some other states have either balked at providing the data or plan to strip out personally identifiable information. Missouri has signed the agreement, Missouri Department of Health and Senior Services spokeswoman Lisa Cox said.
The CDC had asked for states to sign the agreements by Nov. 2, raising questions about whether distribution plans will be affected in holdout states. Pressed on whether Kansas would sign the agreement, Norman said officials were "waiting for more clarity as to how the data and information will be used."
On Thursday, KDHE spokeswoman Ashley Jones-Wisner said in a text message that Kansas has signed the agreement. She went further than Norman on Wednesday, saying the state won't provide any identifying information.
White House spokesman Michael Bars said data use agreements have been submitted by "nearly all" of the 64 states, territories and large cities that federal officials are working with. Others are "currently nearing completion," he said.
"Importantly, such information would only be used to support the unprecedented private-public partnership continuing to harness the full power of the federal government, private sector, military, and scientific community to combat the coronavirus and save lives," Bars said.
Kansas, like all states, is clamoring for the vaccine and has developed plans to provide the first doses to healthcare providers and other frontline workers. The Food and Drug Administration could authorize emergency use within days and Kansas officials have said the first allocation of approximately 2,400 doses could arrive within the next two weeks.
While vaccinations for the general public remain months away, health leaders have already begun work to alleviate skepticism of a vaccine.
Fears that personal information provided to the CDC could be used for other purposes, such as immigration enforcement, will complicate efforts to build trust. The Pew Research Center estimated in 2016 that 75,000 undocumented immigrants live in Kansas.
Some of the state's largest COVID-19 outbreaks have occurred in meatpacking plants, which have long attracted immigrant labor. Nearly 4,000 cases are associated with the plants.
The data agreements includes only "minimal information," Bars said, adding that under no circumstance will social security numbers, passport numbers or driver's license numbers be requested or required.
States also have the option of redacting personally identifiable information and federal health agencies are working to provide encryption technology to improve privacy protections.
Sen. Jerry Moran, a Kansas Republican, told reporters on Thursday that he had only learned of concerns with the data use agreement from the Kansas Department of Health and Environment within the past day.
"I know Dr. (Robert) Redfield well," Moran said, referencing the CDC director. "I'm happy to try to find out any information and I would certainly want Kansans' privacy protected."
Kansas has already grappled with privacy fears during the pandemic. The Kansas Legislature this spring passed a bill making participation in contact tracing voluntary. Sedgwick County health director Adrienne Byrne said in November that public cooperation with the county's contact tracers plunged from between 50 and 70 percent to 14 percent after the bill's passage in June.
Concerns about the personal information of vaccine recipients have been percolating among health officials since at least October, but have been brought to a head by the anticipated emergency authorization of one or more vaccines within days.
In a joint letter to the CDC sent Oct. 15, several health associations, including the Association of Immunization Managers and the National Association of County and City Health Officials, said sharing identifiable data may erode Americans' willingness to get a vaccine.
"Groups of people who would likely be prioritized as essential workers, such as people who are undocumented, migrant farmworkers, food processing plant workers, etc., may be most apprehensive about sharing their information," the letter said.
Nancy Messonier, director of the National Center for Immunization and Respiratory Disease at the CDC, said in an Oct. 26 letter that data sharing is "essential" for tracking national uptake of vaccines, identifying areas of low vaccination and allocating supplies. The information is also needed in administering second doses, she wrote.
Health authorities could likely track emergency physicians and other healthcare workers first in line for vaccinations without a full data use agreement in place because hospitals and health systems have the necessary information, said Prashant Yadav, a supply chain expert at the Center for Global Development and former supply chain strategy leader at the Bill & Melinda Gates Foundation.
"But the moment you go from just emergency health workers to the next category, that's when you need the data use agreements for the system to continue," Yadav said.
Some of the bottlenecks may not arise during the very first wave of vaccinations, but Yadav said they will "start showing up or surfacing when we do the second, bigger wave of distribution. In a way, the first wave is the easiest part."
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