COVID-19 Data Dispatch

Tag: New York City

  • COVID-19 is inspiring improvements to surveillance for other common viruses

    COVID-19 is inspiring improvements to surveillance for other common viruses

    The CDC provides norovirus test positivity data from a select number of labs that report test results for this virus. Due to limited reporting, data are only available at the regional level.

    This week, I have a new story out in Gothamist and WNYC (New York City’s public radio station) about norovirus, a nasty stomach bug that appears to be spreading a lot in the U.S. right now. The story shares some NYC-specific norovirus information, but it also talks more broadly about why it’s difficult to find precise data on this virus despite its major implications for public health.

    Reporting this story led me to reflect on how COVID-19 has revealed cracks in the country’s infrastructure for tracking a lot of common pathogens. I’ve written previously about how the U.S. public health system monitored COVID-19 more comprehensively than any other disease in history; the scale of testing, contact tracing, and innovation into new surveillance technologies went far beyond the previous standards. Now, people who’ve gotten used to detailed data on COVID-19 have been surprised to find out that such data aren’t available for other common pathogens, like the flu or norovirus.

    It might feel disappointing to realize how little we actually know about the impacts of endemic diseases. But I choose to see this as an opportunity: as COVID-19 revealed gaps in public health surveillance, it inspired development in potential avenues to close those gaps. Wastewater surveillance is one big example, along with the rise of at-home tests and self-reporting mechanisms, better connectivity between health systems, mobility data, exposure notifications, and more.

    Norovirus is a good example of this trend. Here are a few main findings from my story:

    • Norovirus is a leading cause of gastrointestinal disease in the U.S., and is estimated to cause billions of dollars in healthcare and indirect societal costs every year.
    • People who become infected with norovirus are often hesitant to seek medical care, because the symptoms are disgusting and embarrassing. Think projectile vomit, paired with intense diarrhea.
    • Even when patients do seek medical care, norovirus tests are not widely available, and there isn’t a ton of incentive for doctors to ask for them. Testing usually requires a stool sample, which patients are often hesitant to do, one expert told me.
    • The virus is not a “reportable illness” for the CDC, meaning that health agencies and individual doctors aren’t required to report norovirus cases to a national monitoring system. (So even when a patient tests positive for norovirus, that result might not actually go to a health agency.)
    • The CDC does require health agencies and providers to report norovirus outbreaks (i.e. two or more cases from the same source), but national outbreak estimates are considered to be a vast undercount of true numbers.
    • Even in NYC, where the city’s health agency does require reporting of norovirus cases, there’s no recent public data from test results or outbreaks. (The latest data is from 2020.)

    As I explained in an interview for WNYC’s All Things Considered, the lack of a national reporting requirement and other challenges with tracking norovirus are linked:

    It seems like the lack of a requirement and the difficulty of tracking kind-of play into each other, where it’s not required because it’s hard to track—but it’s also hard to track because it’s not required.

    The lack of detailed data on pathogens like norovirus can be frustrating on an individual level, for health-conscious people who might want to know what’s spreading in their community so that they can take appropriate precautions. (For norovirus, precautions primarily include rigorous handwashing—hand sanitizer doesn’t work against it—along with cleaning surfaces and care around food.)

    These data gaps can also be a challenge for public officials, as more detailed information about where exactly a virus is spreading or who’s getting sick could inform specific public health responses. For example, if the NYC health department knew which neighborhoods were seeing the most norovirus, they could direct handwashing PSAs to those areas. In addition, scientists who are developing norovirus vaccines could use better data to estimate the value of those products, and determine who would most benefit.

    So, how do we improve surveillance for norovirus and other viruses like it? Here are a few options I found in my reporting:

    • Wastewater surveillance, of course. The WastewaterSCAN project is already tracking norovirus along with coronavirus and several other common viruses; its data from this winter has aligned with other sources showing a national norovirus surge, one of the project’s principal investigators told me.
    • Better surveillance based on people’s symptoms. The Kinsa HealthWeather project offers one example; it aggregates anonymous information from smart thermometers and a symptom-tracking app to provide detailed data on respiratory illnesses and stomach bugs.
    • At-home tests, if they’re paired with a mechanism for people to report their results to a local public health agency. Even without a reporting mechanism, at-home tests could help curb outbreaks by helping people recognize their illness when they might be asymptomatic.
    • Simply increasing awareness and access to the tests that we already have. If more people go to the doctor for gastrointestinal symptoms and more doctors test for norovirus, our existing data would get more comprehensive.

    Are there other options I’ve missed? Is there another pathogen that might be a good example of common surveillance issues? Reach out and let me know.

  • The future of tracking Long COVID

    The future of tracking Long COVID

    Hispanic or Latino New Yorkers were more likely to report Long COVID symptoms than other demographic groups, in a 2021 survey by the city health department. Chart via THE CITY.

    I had two new articles about Long COVID published this week:

    • This story in Science News describes how researchers are working to fill gaps in Long COVID data, largely by collaborating with patients and across different areas of medicine.
    • This story in Gothamist/WNYC describes three public Long COVID clinics run by New York City Health + Hospitals, which offer a range of care to New Yorkers with the condition but fall short of all the specialties needed for comprehensive treatment.

    The reporting process for both stories gave me a lot to think about, in considering potential improvements in recording who has Long COVID and how this chronic disease impacts people.

    And we have a lot of room for improvement. There are plenty of reasons why Long COVID research and data collection are currently difficult, ranging from a lack of consistency in how the condition is diagnosed to historical underfunding for similar chronic diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia. For more details, see this post I wrote in May.

    The U.S. scientific and medical systems also made specific mistakes early in the pandemic that contributed to our current data gaps, including the dearth of PCR testing—leading many current long-haulers to not have positive test results from their initial infections—and early refusals by many doctors to believe patients’ prolonged symptoms had resulted from the coronavirus. Most medical schools do not spend much time training new doctors to recognize complex, chronic diseases, leaving them unprepared to tackle Long COVID.

    But these problems can be addressed—especially if doctors and researchers are willing to step outside their specific fields to collaborate with each other and with patients. Here are a few specific recommendations that I learned about in reporting my stories for Science News and Gothamist/WNYC.

    Listen to and collaborate with patients.

    “Patients know the right questions to ask to properly document their experience,” Lisa McCorkell, one of the founders of the Patient-Led Research Collaborative (PLRC), told me in an email interview for my story.

    In fact, a survey study by PLRC in which patient-researchers asked other long-haulers to describe their symptoms is considered one of the most comprehensive accounts of this condition. Other researchers have used this list of symptoms in designing their own patient surveys.

    Surveys are one important mechanism of compiling patient experiences, as they can capture information that does not make it into medical records. (Common Long COVID symptoms like post-exertional malaise often are not well-captured in these records.) But patients can also weigh in on other aspects of study methodologies, such as how to collect data in a way that won’t overly tax participants or how to compare groups of patients for accurate results.

    Plus, hypotheses from patients can be valuable starting points for clinical trials, as Julia Moore Vogel from the Scripps Research Translational Institute explained to me. Vogel, who is a long-hauler herself, is working on a new study at Scripps that’s informed by her and other patients’ experiences with Garmin wearable devices. The projects funded by PLRC’s grant program offer further examples of research studies informed by patient priorities.

    Connect health records from different sources.

    One major challenge with studying Long COVID is that this complex condition can impact every organ system in the body. You can’t just analyze heart disease records from a cardiology practice, or lung function records from a pulmonary practice. Every patient could be seeing ten or more different specialists, and all of those doctors might inform different pieces of the overall disease puzzle.

    As a result, devising systems that better compile and connect records from different sources is a priority for researchers studying Long COVID. Arjun Venkatesh, a patient-reported outcomes researcher, described this as “the clunkiest part” of his work: there are a lot of “hidden barriers” to connecting records, he said, ranging from privacy protections to technical mismatches. (For example, a patient requesting their records from a particular doctor might be asked to provide a fax number, something most people do not have in 2022.)

    Still, new projects are in the works to make this type of data sharing easier. One example is Kindred, an app designed by Yale researchers that empowers patients to request their electronic health records and share them with scientists studying Long COVID. Patients also have more legal protections in making data requests now, thanks to a new federal rule that took effect this fall.

    Use wearables and other new tracking technologies.

    Smart watches, Fitbits, and other similar trackers are usually advertised for consumers interested in better tracking their individual health and fitness. But they can also provide valuable, long-term data to researchers studying health conditions like Long COVID.

    The Scripps Research Translational Institute is one institution focused on wearable devices, through studies like Vogel’s and another program called the DETECT study, led by epidemiologist Jennifer Radin. In DETECT, researchers compile data from people across the country who have volunteered to share their wearable device data with Scripps. After one of the participants gets COVID-19, the scientists can compare their post-COVID health indicators to the patient’s pre-COVID baseline.

    “We compare each person to themselves over time,” Radin told me when I talked to her for my Science News story. This method is different from traditional medical research, in which two similar groups of people are compared to each other on a population-wide basis.

    Wearables research faces a lot of its own challenges, such as expanding access to more people (by making devices more affordable or even giving them to study participants for free) and creating analysis systems that can make sense of thousands of data points from each patient. But I personally find it fascinating and hope to continue covering this area. I was even inspired by my reporting to buy a smart watch, as a holiday present to myself.

    Local surveys and outreach in partnership with community groups.

    Anyone can get Long COVID—young or old, vaccinated or unvaccinated, with or without prior health conditions. But a lot of people still don’t know about this chronic condition, even when they might be experiencing long-term symptoms themselves.

    As a result, a major priority for Long COVID researchers and patient-advocates is improving education and outreach about this condition. New York City has a program that could serve as an example here: NYC Health + Hospitals runs a hotline called AfterCare, which residents can call to learn about Long COVID and city resources, including the public clinics I wrote about.

    While AfterCare has proactively called New Yorkers who previously tested positive for COVID-19, the program’s administrators are concerned that it’s likely not reaching everyone who could be served by the hotline. Local long-haulers who I talked to for my Gothamist/WNYC story want to see broader outreach—like subway ads, billboards, and commercials—telling people about Long COVID.

    These same outreach programs could also help researchers collect more comprehensive data about Long COVID. Last week, THE CITY, another local NYC outlet, reported on some early results of a survey conducted by the city health department to find out which groups of New Yorkers are most vulnerable to the condition. Unsurprisingly, the survey found that Hispanic/Latino residents and those living in the Bronx were disproportionately impacted.

    I hope to see more local health agencies follow in NYC’s lead to conduct surveys like this one, paired with outreach and education about Long COVID. This type of data could go a long way in showing political leaders where more resources are needed.

    More Long COVID reporting

  • COVID source shout-out: New York wastewater dashboard

    COVID source shout-out: New York wastewater dashboard

    The New York State wastewater dashboard is one of my favorite local data sources. Screenshot taken on November 6.

    I look at a lot of wastewater surveillance dashboards these days—sometimes reporting on this type of COVID-19 data, sometimes trying to gauge my own risk level. The New York State Wastewater Surveillance Network’s dashboard is one of my favorites, both because I like how it’s set up and because of location bias (i.e. I live in New York).

    The New York State network is a collaboration between state agencies and researchers at Syracuse University, the State University of New York, and others. It covers every single county in the state; most wastewater treatment plants included work directly with the researchers, with the exception of New York City (which does its own sampling and sends data to the state team).

    On the dashboard, you can see the coronavirus detection levels and recent trends for every county. Then, upon clicking on a specific wastewater treatment plant, you can see time series of both coronavirus concentration in wastewater and reported COVID-19 cases. Seeing the time series is pretty important because it provides broader context on how current coronavirus levels compare to past trends.

    NYC used to not be included on this dashboard, but the NYC sites were added in recent weeks. To me, this is a pretty big deal because the city doesn’t have its own wastewater dashboard (yet). For now, I’m adding the state dashboard to my regular rotation of local data sources.

    more source spotlights

  • COVID source callout: Andrew Cuomo

    Usually when we do a COVID source callout, we’re putting our sights on a dashboard that’s actually five separate dashboards or a state that likes to surprise us when they update their dataset. This is to say that, usually, we don’t call out an actual source of coronavirus. 

    But that’s what New York Governor Andrew Cuomo apparently wants to be when he grows up, as he opened up limited indoor dining on February 12th for New York City, where Betsy and I both live. We talked last week about a frankly terrifying ProPublica article that warned about the dangers of reopening indoor dining and loosening guidelines in general, not only with variants on the rise, but with most people in the dark of just how on the rise they are. So why, dear god why, would you decide this is the time to LOOSEN restrictions? 

    Look, I can make a few guesses. As much as I think Cuomo is acting really really stupidly, I don’t think he’s an idiot. There’s definitely political and economic pressure, along with a court ruling in mid-January that said there was no “rational basis” for keeping things closed when hospitalizations and deaths are falling – this led to indoor dining resuming in most of the state. 

    But that court ruling did not affect New York City, or wedding capacity restrictions, which are also being loosened in March in the pursuit of “marital bliss.” This is just irresponsible; “marital bliss” isn’t worth it even when there isn’t a deadly pandemic, as Cuomo himself clearly knows. In the announcement, he suggested you could “propose on Valentine’s Day and then you can have the wedding ceremony March 15, up to 150 people. People will actually come to your wedding because you can tell them with the testing it will be safe.” Cuomo is not only about to open up the possibility for more serious supersreader events, he’s also about to rob every introvert of their best excuse for skipping Aunt Marsha’s wedding since she said she’d be serving roasted pangolin. Unforgivable. 

    So apparently the biggest city in the country can reopen indoor dining and have weddings on the horizon when, again, we don’t even know just how much these variants are going to screw us over. I knew Tom’s Restaurant was a dangerous game for my own health, but they’re about to seriously expand their blast radius. 

    more source spotlights

  • March for the dead, fight for the living

    Earlier this weekend, I attended a protest in New York City called, “March for the Dead.” The event sought to memorialize New Yorkers who died of COVID-19 and demand that the federal government better address the realities of this pandemic and protect vulnerable Americans.

    After a rally and a silent, candlelit march across the Brooklyn Bridge, the protest finished with a reading of names. Two organizers read the names of 1,709 New Yorkers whose lives were lost in this pandemic in front of a makeshift memorial comprised of candles and signs. The names came from a database compiled by local NYC publication THE CITY, the Columbia Journalism School, and the CUNY Craig Newmark Journalism School; they comprise only a small fraction (7.2%) of New Yorkers who have died due to COVID-19.

    (Disclaimer: one of the event’s organizers, Justin Hendrix, volunteers with me at the COVID Tracking Project.)

    While this newsletter is a journalism project, it felt fitting this week for me to share a few lines I wrote on the subway home after listening to the name reading. “March for the Dead” reminded me of the people behind the numbers I spend so much time compiling and analyzing—a reminder that I think anyone covering this pandemic sorely needs.

    how long would it take to read all the names?

    1,700 names in the city’s memorial. it took an hour, maybe, give or take.  i wasn’t really keeping track. i was listening to the names, the way they rang out in the open square. the way they fell heavy on the pavement, like drops of rain at the start of a thunderstorm. but this is not the start of a thunderstorm, of course. it’s a hurricane, and another hurricane, and a wildfire, and a tornado, and all of it preventable. the father of one of the readers, kept in a nursing home. grocery store clerks, cafe workers, nurses, and parents, siblings. so many pairs of names that rhyme. so many bodies in tiny apartments, bodies in shelters, bodies hooked up to breathing machines, gasping for every molecule of oxygen.

    this is not the start of a thunderstorm. it’s a hurricane, and we aren’t stopping it. an hour, perhaps, for 1,700 names. how long would it take, to read all 25,000 names of those who died in new york city? all 175,000 who died in america? all the thousands more who have not been counted yet? how long would it take to talk to the families and friends of the people who bore those names, to find out their favorite colors, what they ate for breakfast, what they were looking forward to this year? how long would it take to attend 175,000 funerals?

    this is a metric i can’t count. my back would crack under the weight. all i can do is sit in the square, sit quietly, and listen. and then i return to work, i keep counting the numbers i can count. i let them echo.