COVID-19 Data Dispatch

Tag: population surveys

  • COVID-19 dashboards that haven’t shut down yet

    COVID-19 dashboards that haven’t shut down yet

    The Health Equity Tracker, run by the Morehouse School of Medicine’s Satcher Health Leadership Institute, is one of a few COVID-19 dashboards that is not shutting down at this time.

    We are in an era of dashboard shutdowns. Government agencies, research groups, and media organizations alike are winding down their COVID-19 reporting efforts. Some of these changes are directly tied to the end of the federal public health emergency in May, while others are more broadly attributed to shifting resources.

    In the last couple of weeks alone: the Johns Hopkins COVID-19 dashboard stopped collecting new data, the New York Times switched its COVID-19 tracker to show CDC data instead of compiling original information from states and counties, and the CDC itself announced that its COVID-19 data newsletter will end in May. The White House COVID-19 team will also be disbanded in May, according to reporting from the Washington Post.

    I haven’t done a comprehensive review of state and local COVID-19 dashboards, but I’m sure many of those are similarly shutting down, reporting less frequently, and reducing the types of data that they offer to the public. This is a trend I’ve been following since early last year, when state health departments started to declare COVID-19 was now “endemic” and didn’t require special monitoring resources, PCR testing infrastructure, etc. But it’s been accelerating in recent weeks, following the White House announcement about the end of the federal emergency.

    When explaining why their COVID-19 reporting efforts are ending, organizations often state that the disease is “no longer a major threat” or say that public interest in tracking COVID-19 has waned. I’m skeptical about both of those claims. First of all, we know that COVID-19 is still killing hundreds of Americans each week, with a majority of those being people who have had multiple vaccine doses. And we know that millions are facing activity limitations from Long COVID. As I wrote last month, the U.S. didn’t have a “mild” winter this year; we’re just getting better at ignoring COVID-19’s continued impacts.

    And second of all, I know there’s still an audience for this work—including many of the people who remain most vulnerable to COVID-19. Thank you to everyone who regularly reads this newsletter and blog, sends me questions, shares my work on social media, etc. for constantly validating that the interest is still here.

    With all of you great readers in mind, I’ve compiled this list of COVID-19 dashboards that I know haven’t yet shut down. The list is focused on national sources rather than state/local or international ones, in the interest of being most helpful to the majority of readers.

    • CDC COVID Data Tracker: The CDC’s COVID-19 dashboard is, of course, the primary source for federal data at this point in the pandemic. It provides weekly updates for most metrics (cases, hospitalizations, deaths, vaccinations, variant estimates, etc.); wastewater surveillance data are updated daily, with individual testing sites reporting on different cadences (usually about twice per week).
      Post-PHE update: Still active, but greatly changed. Cases and testing metrics are no longer available (with testing labs and state/local health agencies no longer required to report to the CDC), while other key metrics are updated less frequently or with more of a delay. See this post for more details.
    • Census Household Pulse Survey: Since early in the pandemic, the U.S. Census’ Household Pulse Survey has provided data on how COVID-19 impacted Americans’ day-to-day lives. This survey’s most recent iteration is scheduled for March through May 2023. The Census collaborates with other federal agencies on its surveys, including the CDC for Long COVID questions.
      Post-PHE update: The Pulse survey is typically conducted in two-month installments, with several weeks between each installment to adjust questions and process data. Its most recent installment ended in early May, and the next one has yet to be announced; we should know within the next month whether this data source is ending with the PHE or if it will continue.
    • Morehouse Health Equity Tracker: This project, from the Satcher Health Leadership Institute at the Morehouse School of Medicine, tracks COVID-19 metrics and a variety of other health conditions by race and ethnicity. The COVID-19 data are based on a CDC restricted access dataset; updates will continue “for as long as the CDC gives us data,” software engineer Josh Zarrabi said on Twitter this week.
      Post-PHE update: For COVID-19 data, this tracker utilizes a CDC dataset of cases with detailed demographic information, compiled from case reports sent to the CDC by state health agencies. The CDC dataset was last updated in April 2023, and it’s unclear whether it’ll be updated again (but my guess is it’ll end with the PHE). The Morehouse tracker includes plenty of other health metrics, though, so I expect this dashboard will be able to adjust to the CDC change.
    • APM Research Lab: This research organization, run by American Public Media, has several ongoing COVID-19 trackers. These include COVID-19 deaths by race and ethnicity (national and by state), vaccination rates (national and by state), and Minnesota-specific data, in collaboration with Minnesota Public Radio.
      Post-PHE update: APM is continuing to update its tracker; the most recent update to its COVID-19 deaths by race and ethnicity page occurred on May 17. Its staff will likely need to make some changes to their underlying data sources, since the CDC is now reporting COVID-19 deaths differently, but the basic metrics remain available.
    • Walgreens COVID-19 Index: Walgreens shares data from COVID-19 tests conducted at over 5,000 pharmacy locations nationwide. The tracker includes test positivity (national trends and state-by-state), variant prevalence, and positivity by vaccination status.
      Post-PHE update: Still active, with no change due to the PHE’s end.
    • COVIDcast by CMU Delphi: COVIDcast is a COVID-19 monitoring project by the Delphi Group at Carnegie Mellon University. The dashboard pulls in COVID-19 data from the CDC and other sources, such as Google search trends and antigen test positivity.
      Post-PHE update: No longer includes cases and deaths (which were pulled from the CDC), but still updating other metrics, including hospital admissions, symptom searches from Google trends, and COVID-related doctor visits.
    • Iowa COVID-19 Tracker: Despite its name, the Iowa COVID-19 Tracker displays data from across the country, sourced from the CDC. It’s run by Sara Anne Willette, a data expert based in Ames, Iowa. Willette frequently shares data updates on social media and streams on Twitch when updating her dashboard.
      Post-PHE update: Still active, but with some changes due to the new limitations in CDC data. Dashboard manager Sara Anne Willette shares frequent updates on Twitter about what she’s changing and why.
    • COVID-19 dashboard by Jason Salemi: This dashboard by University of South Florida epidemiologist Jason Salemi is another page displaying CDC data in somewhat-more-user-friendly visualizations. The dashboard is focused on Florida, but shares national state- and county-level data.
      Post-PHE update: Salemi shared on Twitter last week that he is currently assessing whether to keep the dashboard running or decomission the site.
    • Biobot Analytics: Biobot Analytics is the leading wastewater surveillance company in the U.S., tracking COVID-19 at hundreds of sewershed sites through its partnership with the CDC National Wastewater Surveillance System and independent Biobot Network. The dashboard has helpful national- and regional-level charts along with county-level data for sites in Biobot’s network.
      Post-PHE update: Still active, no changes due to the PHE’s end. In fact, Biobot continues to add more wastewater testing sites to its network.
    • WastewaterSCAN: WastewaterSCAN is another leading wastewater project, led by professors at Stanford and Emory Universities. The project started with sites in California, but has since expanded nationwide; it’s tracking several other common viruses in addition to COVID-19.
      Post-PHE update: Still active, similarly to Biobot’s dashboard.
    • For more wastewater data: Check out the COVID-19 Data Dispatch resource page with annotations on state and local dashboards.
    • KFF COVID-19 Vaccine Monitor: Since late 2020, the Kaiser Family Foundation has monitored American attitudes around COVID-19 vaccines and other pandemic issues. Updates were initially released monthly, but have become less frequent in the last year (the latest update was published on February 7, 2023).
      Post-PHE update: This KFF project appears to be ongoing, but at a lower frequency of updates; the most recent update is still February 2023. A newer KFF dashboard (tracking Medicaid enrollment and unwinding) is also receiving ongoing updates.
    • Axios-Ipsos COVID-19 polls: Axios has partnered with the polling firm Ipsos on regular polls tracking COVID-19 views and behaviors. The polling data are available in PDF reports and in spreadsheets from Roper. In 2023, Axios and Ipsos shifted their focus from COVID-19 to broader questions about public health, with a new series of quarterly polls.
      Post-PHE update: These two organizations will continue their new series of quarterly polls about public health, launched in early 2023. The most recent installment was posted this past week and includes questions about the PHE’s end, gun violence, opioids, and more.

    Have I missed any major data sources? Send me an email or comment below to let me know, and I’ll highlight it in a future issue.

    Editor’s note, April 2, 2023: This post has been updated with two additional dashboards (APM Research Lab and Walgreens), and additional information on the CDC’s wastewater surveillance dashboard.

    Editor’s note, May 21, 2023: This post has been updated with notes about changes impacting these dashboards due to the end of the federal public health emergency (PHE).

    More federal data

  • How researchers track Long COVID’s impacts

    How researchers track Long COVID’s impacts

    The Census and CDC’s Household Pulse Survey provides one major source of data on Long COVID prevalence.

    I got an interesting question from a reader last weekend, asking if excess deaths might be one way to identify the impact of Long COVID. It’s an interesting idea: could the numbers of deaths from medical causes above what researchers expect in a given timeframe indicate some premature deaths tied to Long COVID?

    Based on my previous work with excess deaths (see MuckRock’s Uncounted project), I think this could be possible, though it’d likely be very hard to identify direct relationships between Long COVID and specific deaths. As far as I know, no researchers are working on this question; if you know of anyone who is, please reach out.

    Still, the reader’s question got me thinking about how, exactly, we track the impacts of Long COVID. Doctors, researchers, and long-haulers themselves have learned a lot about the condition over the last three years. We still don’t have clear estimates of exactly how many people in the U.S. are dealing with this chronic disease, but we’ve come much closer to understanding its impacts than we were when patients first began advocating for themselves in 2020.

    Tracking Long COVID is challenging because of uneven access to COVID-19 tests and to medical care, which means long-haulers with certain types of privilege are more likely to get an accurate diagnosis. A lack of knowledge about Long COVID, both among medical professionals and among the overall population of people who might get it, also contributes to this issue. (For more details, see this post from early December.)

    Still, some strategies have emerged for identifying people with Long COVID and tracking how the condition is impacting them. Here are a few.

    Following people who were hospitalized for COVID-19:

    In this strategy, researchers identify people who had COVID-19 and track how the virus impacts them over time. It’s often easiest for researchers to track people who were hospitalized, since hospitals keep detailed medical records of their patients, though this tactic leaves out long-haulers who initially had mild cases.

    Sometimes, researchers doing this type of follow-up study will directly survey COVID-19 patients, which can lead to more comprehensive data than using health records alone. One recent study in this category found that, among a group of 800 adults hospitalized for COVID-19, about half were still experiencing some financial issues and limitations in their ability to do day-to-day activities six months later. The study’s authors noted that financial issues were “reported more frequently” among patients who identified with demographic minorities.

    Following COVID-positive patients through electronic health records:

    In other studies, researchers use electronic health records to identify how people who had COVID-19 fare months later. Two recent studies associated with the National Institutes of Health’s RECOVER initiative fall into this category. One paper utilized records from New York City health centers, and found that Black and Hispanic adults were more likely to have potentially Long COVID-related health issues following a COVID-19 case. The other paper, which used records from 34 medical centers across the U.S., found that white, female, non-Hispanic patients living in areas with greater healthcare access were more likely to receive an actual Long COVID diagnosis.

    Angela Vázquez, president of the Long COVID group Body Politic, summarized the two new studies succinctly on Twitter, writing: “Black and Hispanic Americans appear to experience more symptoms and health problems related to #LongCovid than white people, but are not as likely to be diagnosed with the condition.” Vázquez also pointed out that the studies may have missed neurological symptoms among Black and Hispanic patients, due to less access to care for these groups.

    Broad surveys of potential patients:

    Electronic health records are far from perfect sources of Long COVID data, as they often present only sets of information that doctors are already compiling—and they are often biased towards the people who are able to access medical care for COVID-19 (or Long COVID) in the first place. As a result, some researchers track Long COVID through broader surveys, seeking to identify everyone who might have some long-term symptoms following a COVID-19 case, even if those people might not be calling their condition “Long COVID.”

    The Census and CDC’s Household Pulse Survey questions on Long COVID are one notable example of this strategy. Census researchers ask a random sample of Americans whether they’ve had “any symptoms lasting 3 months or longer” following a COVID-19 case, then follow up with questions about whether those symptoms are current and whether they impact the respondent’s ability to carry out day-to-day activities. The resulting data provide a broader view of Long COVID in the U.S., including people who may not have sought medical care for their symptoms.

    Biological studies of specific organs impacted by COVID-19:

    In order to better understand how a case of COVID-19 may lead to long-term, debilitating symptoms, some researchers focus on studying exactly what happens to different parts of the body after a coronavirus infection. This research sometimes focuses on testing for the continued presence of virus after a patient’s acute COVID-19 case is over or tracking changes to the immune system, as scientists test different theories into how Long COVID occurs.

    One major area of research has been the brain. Freelance journalist Stephani Sutherland recently published a major feature in Scientific American exploring how Long COVID impacts the brain and nervous system, summarizing research into the biological causes of common symptoms like fatigue and brain fog. Physician E. Wesley Ely, who cares for Long COVID patients, wrote an essay on the same topic that appeared in STAT News this week; Ely discussed what he’s learned from autopsy studies examining the brains of people who had COVID-19.

    Identifying trends in the labor market:

    Finally, researchers often seek to track the impacts of Long COVID indirectly, by looking at statistics on people who have left the labor market during recent years. It’s no secret that a lot of people have left their jobs during the pandemic; Long COVID experts argue that the chronic disease may be one major driver of the labor shortage. One often-cited Brookings Institution analysis suggested two to four million people may be out of work due to Long COVID.

    This strategy for studying Long COVID may be the most difficult, as it’s hard to actually tie job loss numbers to the condition without more specific data. Most research surveys or electronic health records databases don’t ask people about their work situations; the recent study cited above is a notable outlier. Similarly, most unemployment claims and short-term disability datasets don’t ask people if Long COVID is contributing to their need for assistance.

    Still, I hope to see more studies in the future that examine Long COVID’s impact on work and other activities. Related: the U.S. Department of Labor recently published a report about the need for more assistance geared toward workers with Long COVID.

    More Long COVID data

  • Sources and updates, September 18

    • COVID-19’s impact on the workforce: Economists at the National Bureau of Economic Research released a new working paper this week, showing that COVID-19 has “persistently” reduced the U.S.’s labor supply. Using data from the Census’ Current Population Survey, the researchers found that workers who had to take off at least a week from work due to COVID-19 were seven percentage points less likely to still be in the labor force a year later, compared to those who didn’t miss a week. Overall, Long COVID pushed about 500,000 people out of the workforce, the paper estimates. Notably, this estimate is much lower than the analysis from the Brookings Institution published last month; the gap between these two reports suggests a need for more robust data collection on Long COVID and work.
    • Long COVID prevalence from a population survey: Last week, I shared a new preprint from Denis Nash and his team at the City University of New York, reporting on the results of a national survey used to determine true COVID-19 prevalence during the BA.5 surge. This week, Nash et al. shared another preprint from that same survey, focused on Long COVID. Based on the nationally-representative survey (sample size: about 3,000), the researchers estimate about 7.3% of U.S. adults are currently experiencing Long COVID symptoms—matching estimates from the Household Pulse Survey. One-quarter of those Long COVID patients surveyed reported that their day-to-day life activities were significantly impacted.
    • Lancet COVID-19 Commission shares lessons from the pandemic: The Lancet COVID-19 Commission is an interdisciplinary group of scientists convened by the journal to study the COVID-19 crisis and make recommendations for the future. In the group’s final report, released this week, the scientists focus on “failures of international cooperation” that have contributed to unnecessary illness and deaths. Those failures include delays in acknowledging that the coronavirus spreads through the air, not enough funding for low- and middle-income countries, “the lack of timely, accurate, and systematic data,” and more.
    • COVID-19 archive of Dr. Fauci’s emails: The COVID-19 Archive is a project aiming to compile digital documents tracing the early phases of the pandemic. Its prototype iteration allows users to search and sort through the early-COVID inbox of Dr. Anthony Fauci, via email records contributed by investigative reporter Jason Leopold. (MuckRock, where I work part-time, is a collaborator on the project, but I’m not personally involved with it.)
    • U.S. has active circulation of vaccine-derived polio: This week, the CDC and World Health Organization formally announced that the polioviruses spreading in New York state constitute active circulation of vaccine-derived polio. Most other countries that meet this WHO classification are developing nations in Africa, as well as Israel, the U.K., and Ukraine. For more on what exactly “vaccine-derived polio” means and how the disease made a comeback in the U.S., I recommend reading Maryn McKenna in WIRED.
    • Neurological symptoms associated with monkeypox: Here’s one study in the CDC’s Morbidity and Mortality Weekly Report that caught my eye this week: the agency has identified two cases in which monkeypox patients faced inflammation in their brains (called encephalomyelitis), leading to neurological symptoms. Both patients were hospitalized and required weeks of rehab, including use of walkers. The CDC says these symptoms are rare but worth monitoring, and is encouraging local health agencies to report any further cases.

    All featured sources

  • Sources and updates, September 11

    • White House plans for annual boosters: This week, Biden administration officials announced a plan for one COVID-19 shot each year, on a similar timeline to the flu shots distributed every fall. In this plan, this fall’s Omicron-specific boosters are the first iteration of annual boosters. Some scientists are skeptical about the plan, given that (as I discussed last week) we have very little data on how well the new boosters work. It could be preemptive to say just one shot each year will be enough, and the federal government should also be investing in next-generation vaccines that might better prevent infection and transmission.
    • Urgency of Equity Toolkit: The People’s CDC, a health advocacy organization aiming to fill gaps in COVID-19 guidance left by the official CDC, has published a toolkit focused on school safety for the fall. The presentation walks readers through why public health measures are still needed in K-12 schools and potential layers of protection, such as improved ventilation, surveillance testing, and improving pediatric vaccination rates.
    • Parents and caregivers lost to COVID-19: Speaking of protecting children, a new study published in JAMA Pediatrics this week estimates how many children have lost parents or caregivers during the pandemic. The researchers (an international group including experts at the World Health Organization, World Health Organization, and others) produced their estimates based on global excess mortality data—going beyond deaths officially reported as COVID-19. In total, the study estimates about 10.5 million lost parents or caregivers and 7.5 million became orphans worldwide.
    • True virus prevalence during the BA.5 surge: I’ve previously cited the work of Denis Nash and his team at the City University of New York; they utilized a population survey to estimate how many New Yorkers actually got COVID-19 during the city’s spring surge. This week, the team shared a new study that uses the same approach for the whole country. While their sample size was fairly small (about 3,000 people) and the study has yet to be peer-reviewed, its findings are striking: about 17% of U.S. adults surveyed were infected by the coronavirus during a two-week period from late June to early July, around the peak of the BA.5 surge.
    • New independent effort to study Long COVID: This week, a group of researchers, clinicians, and patients announced the Long Covid Research Initiative, a new collaborative effort to study the condition and identify potential treatments. The group has raised $15 million in private funding and aims to move more quickly than public or academic efforts that have been bogged down in bureaucracy (among other challenges). I’m excited to see what this new group finds.

    All featured sources