Privacy and public health loom large in clash over vaccine registry

By: - January 19, 2022 5:51 am
A syringe and the tops of three vials

Having a record of vaccinations in one place, rather than in medical records across several practices, makes it easier to ensure a person’s vaccinations are up to date and avoid repeating a vaccination. (Getty Images)

This story was updated on Jan. 19 at 10:25 a.m. to correct Rep. Melissa Blasek’s place of residence. She lives in Merrimack.

Lawmakers aiming to make it harder for the state to collect vaccination records of Granite Staters cite a 2018 amendment to the state constitution that affirmed the inherent right of a person to live free from governmental intrusion in private and personal information.

Requiring permission to add someone to the vaccine registry via an opt-in process rather than allowing them to opt out, they say, protects that right. 

Here’s what they don’t say and maybe don’t know.

The co-author of that constitutional amendment, former state Rep. Neal Kurk of Weare, fought those same opt-in efforts in 2015 because he believed the registry’s public health value depended on including as many people as possible.

“It seemed to me that the number of individuals who wouldn’t care whether their names and information were in there was larger than those who would be concerned about privacy and wanted to opt out,” Kurk said in a recent interview. “I felt the public interest was better served with that balance.”

Kurk’s support has waned since then – not because he feels differently about the public health and privacy balance but because he feels the Department of Health and Human Services has made it far too difficult to opt out. The form to do so requires the signature of a health care provider. 

And he understands, too, the objections to a registry at all, fueled by unrelenting pressure from peers, the government, and the media to get vaccinated. But he sees a compromise: Keep the registry opt-out and make opting out as simple as checking a box, he said.

Kurk expects he’ll share those thoughts when House Bill 1606, which seeks to make the registry opt-in, gets a hearing. (A similar effort last failed, 14-7, in a House committee but never made it to the floor.)

Gov. Chris Sununu has said he would support making the registry opt-in. Asked about this position last week, Sununu elaborated. 

“Opt-out is the best way to do it,” he said. “But if the choice is between an opt-in model and no registry, I’ll take the opt-in model because it’s so important to register. So, I’d be supportive if that was just basically the choice of last resort.” 

Sununu said he agreed that any change to the current model would risk public health. “We’re not doing a registry because it’s a nice exercise,” he said. “We’re doing a registry because there’s public health benefits. And the benefits increase the more people that are actually part of the registry.”

Long time coming

Former governor Jeanne Shaheen signed legislation permitting the state to create a vaccine registry nearly 20 years ago. New Hampshire was the last state to have one when Health and Human Services finally had the money, technology, and rules in place to launch it – just as the pandemic hit.

Like all registries, it has two primary purposes, both related to protecting Granite Staters’ health. Having a record of vaccinations in one place, rather than in medical records across several practices, makes it easier to ensure a person’s vaccinations are up to date and avoid repeating a vaccination.

The information collected includes not just a person’s name, address, and the vaccine they received, but also details like the vaccine’s lot number and even which arm they got it in. In a pandemic or outbreak, that information helps public health officials to cross-check hot spots with vaccination rates. And if a particular lot of a vaccine is raising concerns, the state can contact those who’ve gotten it.

“The immunization information system is really designed as a safety mechanism,” said Tricia Tilley, director of the Division of Public Health Services at Health and Human Services. 

Until the registry went live, there were few legislative efforts to shape it.

The most significant was House Bill 283, co-sponsored by Kurk in 2015. As introduced, it sought to keep the child vaccine registry opt-out but make the one for adults opt-in, a process shown to decrease participation. (Only Texas and Montana have made their registries opt-in.) Along the way, though, Kurk co-sponsored an amendment to keep the registry opt-out for everyone. 

According to minutes of a committee hearing at the time, Kurk argued the original bill was “extremely strong in terms of privacy protections. However the large amount of privacy could end up being detrimental to public health.” 

It continued, “Rep. Kurk believes that we should place the burden on those who value their privacy over public health to opt out,” the minutes said. “He believes concerns about freedom are adequately covered under language in this bill.”

The pandemic has challenged the state’s new registry in two significant ways.

Health and Human Services has simultaneously had to oversee a statewide vaccination effort during a major health crisis while teaching hundreds of providers how to log new and prior vaccination records and comply with requirements they explain to every patient their ability to opt out. 

“We’re building the system right at the Super Bowl,” Tilley said. 

And that effort has collided with increased skepticism of the COVID-19 vaccine and intense distrust of the state and federal government. Although the state does not provide information from the state registry to the federal government, privacy concerns are common. (Health and Human Services is seeking to use nearly $84,000 in federal pandemic money to study what information is being collected for the registry and what privacy controls are in place to protect it.)

Rethinking the registry

The skepticism and anger has inspired not only the opt-in legislation but three other bills related to the registry. 

House Bill 1487 would remove the requirement that a doctor sign the opt-out form. House Bill 1488 would prohibit the discrimination of anyone who chooses not to participate in the registry. And House Bill 1608 is a response to Sununu’s emergency order temporarily prohibiting anyone from opting out of the registry. It would require Health and Human Services to make at least three attempts to contact everyone who received a COVID-19 vaccine and wasn’t allowed to opt out. 

Republican Rep. Melissa Blasek of Merrimack, executive director of Rebuild NH, which opposes all government medical mandates, co-sponsored three of the bills. 

“The reality is, for all these years we have not had a registry and we have not had any health crisis because of it,” she said. And she sees a conflict with Kurk’s 2018 constitutional amendment because she doesn’t trust that people are told they don’t have to participate in the registry. 

“They are collecting information on you, and are not necessarily informed of that,” she said. “I’m big on informed consent. This generally violates informed consent if people are not aware.”

Her argument is not unlike the one Rep. Tim Lang, a Sanborton Republican who sponsored the opt-in legislation this year and last, will make.

“My intent is to make it clear, to let people know their data is being tracked,” he said. “There is no explicit conversation that occurs around the registry between a provider and a patient.” He too pointed to the constitutional amendment, which won 81 percent of the vote.

“The will of voters was so clear, I wanted this bill to mirror that,” he said. “You have to agree to let the government track your data.”

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Annmarie Timmins
Annmarie Timmins

Senior reporter Annmarie Timmins is a New Hampshire native who covered state government, courts, and social justice issues for the Concord Monitor for 25 years. During her time with the Monitor, she won a Nieman Fellowship to study journalism and mental health courts at Harvard for a year. She has taught journalism at the University of New Hampshire and writing at the Nackey S. Loeb School of Communications. Email: [email protected]