The prospect of suddenly falling gravely ill with no early symptoms is one of the coronavirus’s many frightening aspects, one that Monica Valencia understands all too well. In July, a family member died of Covid-19 after an extremely short illness that seemed to come out of nowhere. Only one symptom, shortness of breath, ever manifested. Within days, the relative was dead.
“I don’t want anyone else to go through what my family went through,” Valencia said.
Now she’s hoping to contribute her health data so that no one else has to. In July, Valencia was among 400 employees of the San Diego Metropolitan Transit System outfitted with wearable Fitbit fitness devices as part of a study tracking early signs of Covid-19 launched in March by the Scripps Research Translational Institute in San Diego. The devices monitor heart rate, sleep patterns, and physical activity levels; if they can pick up the subtle physiological changes that herald infection, they could nudge users to get tested even before symptoms appear. Bringing such tech-based Covid-19 detection to an entire community could spot outbreaks earlier, alert individuals who may remain asymptomatic but contagious, and help local officials increase the effectiveness of their testing and tracing protocols. In a pandemic that has so far stubbornly resisted high-tech countermeasures, mass deployment of health trackers could be a powerful new public health weapon.
Several studies are looking at the effectiveness of wearables as Covid detectors, and they are showing promising results. But they have major drawbacks. Most studies require participants to own their own wearable devices, which sell for anywhere from $50 to $400 — a big data gap in a pandemic where low-income frontline workers are among the most vulnerable. (Pew Research Center has found that some 31% of Americans whose households earn $75,000 or more per year report using wearable devices, compared to only 12% of those in households earning less than $30,000.) Other issues could limit the effectiveness of this technology. As with tech-powered contact tracing efforts, some people are concerned with privacy issues and government access to health information — the same surveillance fears that also haunt “smart city” programs that harvest data from residents. Researchers must both overcome those challenges and confront one additional barrier: a long legacy of mistrust between medical institutions and low-income communities of color.
The Scripps study, called DETECT, monitors the biometrics of 35,000 participants through an app that pulls data from Fitbits, Apple Watches, and other wearable devices. Lead researcher Jennifer Radin, an epidemiologist at Scripps, has compared day-to-day changes over baseline health levels and found signs that the sensor data can help detect Covid-19 before symptoms appear better than self-reported symptoms alone. Eventually Radin hopes to build an alert system that tells participants when their health patterns indicate infection; it could then send them testing information or an at-home testing kit and connect them with a contract tracer if they test positive.
Anyone who uses a wearable can download Radin’s app to participate in this work. The MTS workers are among a few groups in and beyond the San Diego area who have received free Fitbits, donated by the device maker, that Radin’s team contacted to participate in the study. Healthcare workers at Scripps’ clinical facilities have also received a batch, as have a number of osteopathic doctors in rural communities of the U.S., a partnership that Scripps set up through the Osteopathic Foundation. “It’s exciting to potentially roll out the study in populations that might not have access all the time to these devices and hopefully create something that is really useful,” Radin said.
Radin and other scientists are going further, setting up a study in Jackson, Mississippi, to distribute wearables to low-income African-American residents, one of the pandemic’s hardest-hit populations nationwide. More than 80% of Jackson’s population is Black and nearly 30% live under the poverty line; the city has seen more than 500 cases of Covid-19. Initiated by the World Economic Forum, the Jackson program is still in the early planning stages about how it would work, how it would be funded, and whom exactly it would target.
Among 31 participants who tested positive for Covid-19, 82% had data on their health devices that indicated infection.
However, a program that straps digital trackers to the wrists of African Americans in a bid to study their health faces challenges beyond the question of device access. In the U.S., medical experimentation on Black people has a long history of deception and non-consensual practices, from syphilis injections by federal researchers at Tuskegee, to Cold War-era radiation studies by the Department of Defense, to the uncompensated taking of cancer cells by doctors at Johns Hopkins University. That has scarred the Black community with deep trust issues towards health care institutions, said Primus Wheeler, the executive director of the Jackson Medical Mall Foundation, a health care complex serving the city’s disadvantaged residents. (It’s located in the husk of a former shopping center.)
“When you even mention research, folks think about themselves as a guinea pig,” Wheeler said. “Even going to the hospital — people may not want to go to a teaching hospital because they fear being practiced on.”
That’s also why Wheeler sees so much value in the wearable devices: They can help prompt wearers to seek medical attention early, instead of waiting until it’s too late. He and other community health leaders in Jackson are collaborating with city leaders, WEF executives, and researchers to design the study in a way that is mindful of trust divides. Wheeler thinks that they could tap into Jackson’s network of community health workers — community members trained on the basics of at-home medicine and who act as a liaison to institutional providers — to distribute the devices and ensure participation.
The DETECT study is just one of several projects employing wearables as Covid-19 detectors. Fitbit’s own research program, which encompasses 100,000 people in the U.S. and Canada, is catching signs of the disease before symptoms show. So is a 5,000-person study led by Michael Snyder, a professor of genetics at Stanford University. Snyder’s team is now building an algorithm that can scan device data at scale and alert wearers to get tested and self-isolate when signs of infection show. In a sub-analysis of 31 participants who tested positive for Covid-19, Snyder found that 82% had data on their devices that indicated infection — such as an elevated heart rate — at or before the time symptoms appeared.
But the participants whose health data did not hint at their serious illness were likely people with pre-existing conditions, Snyder said, highlighting another gap between wearables research and the populations most at risk for Covid-19. Snyder said that his project has distributed free devices to high-risk groups — specifically people with family members who’ve had Covid-19. But medical confidentiality requirements have made that process a challenge.
Still, he believes that digital divides shouldn’t be a reason not to pursue tech-based medical research. Over time, he believes the devices will come down in price and could serve as health equalizers. “It shouldn’t matter if you’re rich or poor — it’s important information that this provides access to,” he said.
Other researchers are taking a different approach from the get-go. Jessilyn Dunn, a professor of biomedical engineering at Duke University, is also leading a research program using smartphones and smartwatches. So far, the vast majority of participants in her Covidentify study have been people who already own those devices, and as a result their demographics have been skewed towards more affluent, less vulnerable people. Now, she’s “working like crazy” to distribute 450 devices to underserved communities around Durham, North Carolina, with a focus on Black and Latinx residents. Firefighters, meatpacking plant workers, and elderly churchgoers are among those who’ve already been equipped with smartwatches that can detect changes in their heart rate and step counts.
Key to Dunn’s work is making sure people know how to use the technology: Her research coordinators talk to participants regularly to make sure they know what they need to do. Unlike others, her study’s app does not collect location data by default, and she does not plan to link her results to any contact tracing program because of potential privacy issues. But she still foresees challenges: Immigrants with a fear of deportation, for example, might still be skeptical of participating.
“We want to include all sorts of demographics in our community, but it might not work for everyone,” she said.
So far it seems to be working for Valencia. She doesn’t feel spooked by the privacy issues, noting that the Scripps study allows participants to opt out of sharing location data and other personal details. She’s also learning about her body in ways she wouldn’t otherwise, observing how her heart rate fluctuates based on the daily stress she experiences. But mostly she likes contributing to something bigger. “If you do it, it helps with the research,” she said. “For me, the positives there outweigh any of the personal information that is shared.”
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