A federal database meant to keep track of COVID-19 vaccine treatments is receiving some pushback from state governments, in part because of privacy concerns and in part because certain state data protection laws do not allow all of the requested information to be shared.
As part of the “Operation Warp Speed” rollout of tens of millions of initial COVID-19 vaccine doses to high-risk populations and essential workers, the Centers for Disease Control and Prevention (CDC) and Department of Health and Human Services (HHS) are requesting information about delivered injections from the states. This information is to be stored in the federal “Data Clearinghouse” for a number of purposes, chief among them ensuring that the needed second doses of the COVID-19 vaccine are delivered and optimizing vaccine distribution. Though this national database is only to be accessed by CDC-cleared health officials with a relevant need for the data, some state leaders are concerned that its mere existence will discourage some populations from taking the vaccine.
Questions about the federal database
Col. Deacon Maddox, director of the US Army Logistics Data Analysis Center that will draw on the federal database for decisions about distributing the COVID-19 vaccine, told the New York Times that the federal agencies are not requesting Social Security or driver’s license numbers. However, they are asking for an assortment of personally identifiable information: names, date of birth, gender, ethnicity, and home addresses with zip code.
The central issue at the moment is that not all states are willing or able to provide this full range of information. The CDC has asked all of the states to sign a “data use agreement” that lays it and the HHS’s need for and planned use of the personal information in question: “to assess and verify second-dose vaccination, to assess vaccine safety, and to allow for critical vaccine effectiveness monitoring.”
Some states have refused to sign the data use agreement, and others have signed but stated that they do not intend to provide the full range of personal information. One of the leading voices in resistance to the federal database is Gov. Andrew Cuomo of New York, who stated to the media that he believes this information will be made available to the Department of Homeland Security (DHS) and Immigrations and Customs Enforcement (ICE) for the purposes of finding and deporting undocumented immigrants.
The CDC and HHS have stated that the personal information will only be available to public health officials that pass a CDC credentialing process and that it is necessary to track various factors as this new and relatively untested COVID-19 vaccine is rolled out: whether there are differences in effectiveness in different populations, to track any adverse reactions and to ensure that people who move across state lines in between doses have the correct second dose available to them in their new location. Healthcare providers will eventually be able to use the system to look up a patient’s name and see which vaccine type they received and when.
COVID-19 vaccine faces logistical complications
A central reason for the creation of the federal database is that both the Pfizer and Moderna vaccines require two doses administered from 21 to 28 days apart to reach the lofty 90+% efficacy numbers reported in clinical trials. With only the initial dose, the expected efficacy drops to around 70%. The two vaccines are not interchangeable; one must stick with the type they initially take. The US had set a target of 20 million vaccinations completed by the end of 2020, but thus far has only completed about 1 million nationwide. With far fewer doses of vaccine available than members of the national population, health authorities want to be sure that enough of the right type of vaccine is in the right place when the second dose is due to be administered.
The CDC is anticipating that all of the states will sign the data sharing agreement, but it is still unclear exactly how much health information each of them is going to provide. The state of Pennsylvania reportedly submitted redacted information to the federal database initially, which was rejected by the CDC. Minnesota has stated that it will not report any of the requested personally identifiable information, citing state data protection laws. And New York has made clear that it does not plan to cooperate.
Some studies have shown a disproportionate negative impact of COVID-19 cases on immigrant communities due to a confluence of factors: general overall lower income and access to medical care combined with greater likelihood of living in multi-person multi-generational homes. Estimates put the number of undocumented immigrants in the US at about 11 million, and this group will generally go out of its way to avoid anything that involves personally identifiable information going into a federal database out of fear it will be used for deportation. That could mean a large portion of a vulnerable population opting to never receive the COVID-19 vaccine.
Some states have refused to sign the #datause agreement, and others have signed but stated that they do not intend to provide the full range of #personaldata. #privacy #respectdata
Click to Tweet
The CDC also plans to issue paper COVID-19 vaccine record cards after the first dose is administered, showing the type used and the date the second dose is required. While this paper record could potentially circumvent the need for being logged in an electronic federal database, it brings its own set of concerns; chiefly that private businesses will begin requiring a vaccine card for entry.