The digital divide can be deadly. That has been the stark lesson of the COVID-19 pandemic, which has revealed how decades of underinvestment in digital infrastructure have left millions of Americans cut off from help during COVID-19. This has prevented many from finding vaccine appointments, it has thwarted efforts to release contact-tracing apps, and now it’s undermining the safety of the vaccine.
The COVID-19 vaccines have been widely heralded as incredibly safe and effective, far exceeding even the most optimistic hopes for how quickly and effectively we could develop the jab. But given the historic speed with which the vaccines were rolled out, more data is needed. This is why the CDC developed v-safe, a long-term vaccine surveillance program.
Post-injection surveillance is crucial, not only to monitor for side effects (which are quite rare and mild), but also to remind users about their second dose and monitor how long the vaccines remain effective. The problem is that the CDC made a crucial error, one that could undermine v-safe and lead to blind spots in the data it collects. You see, v-safe requires a smartphone.
That may not sound like a big hurdle, but the truth is that at least one in five Americans lacks access to a smartphone. These patients not only lose out on follow-up information, such as second dose reminders, but they also can’t easily record their side effects or report any future COVID-19 diagnosis.
When asked for comment, the CDC declined to explain the reliance on smartphones or if it had considered a v-safe interface for those without access to smartphones. CDC officials noted that several additional health reporting systems obtain data on adverse drug events directly from doctors and hospitals, including the Vaccine Adverse Event Reporting System and the Veteran Administration’s Adverse Drug Event Reporting System. However, officials also noted that v-safe serves unique health surveillance functions, such as its registry for pregnant patients who receive a COVID-19 vaccine.
There was no reason that the CDC needed to exclude millions from their platform. Once you become a user, v-safe communicates entirely through SMS. With the creation of an SMS registration portal, the CDC could reach 60 million more Americans. More importantly, the CDC could get even more information on the long-term efficacy and side effects of the COVID-19 vaccines, collecting data from communities that have low smartphone ownership rates.
This need is particularly acute for those over 65. While nearly all senior citizens have an SMS-capable smartphone, roughly half don’t use a smartphone. Yet at the same time, seniors are one of the groups where we need post-vaccination data the most. Those over 65 are more than 1,000 times more likely to die of COVID-19 compared to teens and children. Even a small reduction in vaccine effectiveness over time for this cohort could lead to a massive increase in mortality. And those over 65 also can respond differently to the COVID-19 vaccine.
Recently, this point was highlighted when German chancellor Angela Merkel announced that she would not take the Oxford-AstraZeneca vaccine. While Merkel strongly supports the German vaccination effort, she noted that the Oxford-AstraZeneca shot hasn’t been approved for those over 65, and Merkel herself is 66. Fortunately, both the Pfizer and Moderna vaccines have been shown to be effective and are approved for adults over 65. But the reason we need v-safe is to ensure those efficacy numbers hold up over the long term, and that is a lot harder to know when nearly half of the seniors are excluded.
And they’re not the only ones. V-safe also excludes 25 million people in the U.S. with limited English proficiency. While the CDC has promotional flyers available in six languages, the app itself is only in English. This means the immigrant communities who have been hit hardest by COVID-19 will once again be overlooked.
A core lesson of this pandemic has been that we must build our public health infrastructure to be equitable and inclusive, but it’s a lesson that our leaders keep failing to learn. Instead, we keep offering high-tech solutions to the pandemic that only end up exacerbating inequality.
First, we were told that contact-tracing apps—the myriad of smartphone-based tracking devices that claimed to monitor the spread of COVID-19—would save us. But the public never wanted to download these clunky tracking tools, and even when they did, the apps continued to come up short, failing to detect those spreading COVID-19 while also giving false alarms to those who did. After millions spent on outreach and months of work, the consensus is increasingly clear that these apps were nothing more than a high-tech distraction.
More recently, reporting has found that the millions of dollars college campuses wasted on COVID-19 tech, such as temperature scanners and wearable heart monitors, failed to live up to the hype, turning schools from open institutions of learning into some of the most closely watched spaces in the country.
And now the focus is on smartphone vaccine passports, with tech giants such as Microsoft and Oracle trying to push the surveillance system to the Biden administration as a way to reopen our society sooner. But this is more likely to become just a high-tech form of medical segregation.
V-safe is different from these other experiments, since it is a tech product that could actually work with just one small tweak. Repurposed on a genuinely inclusive platform, v-safe could obtain truly representative data on the long-term efficacy of the COVID-19 vaccines, creating an early warning system for any erosion in effectiveness. But fixing this one platform is not enough. To ensure we do better in the future, we also need to fix the biased design mindset that led to this failure and left behind the Americans most impacted by the pandemic.
Albert Fox Cahn (@FoxCahn) is the founder and executive director of Surveillance Technology Oversight Project (S.T.O.P.), a New York-based civil rights and privacy group, and a fellow at the Engelberg Center for Innovation Law & Policy at N.Y.U. School of Law.
William Owen is the communications associate at S.T.O.P.
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