Tag: Federal data

  • HHS releases long-awaited national profile reports

    HHS releases long-awaited national profile reports

    For months, public health advocates have called on the federal government to release in-depth data reports that are compiled internally by the White House Coronavirus Task Force.

    The reports include counts of COVID-19 cases, deaths, and tests, as well as test positivity calculations. In addition to state-level data, the reports feature county-level data and even data for individual metropolitan areas, color-coded according to risk levels for each region. The reports have also drawn on these data to provide specific recommendations for each state. They have been a key piece of the federal government’s support for governors and other state leaders—but they haven’t been shared with the public.

    Liz Essley Whyte and her colleagues at the Center for Public Integrity have obtained copies of many of these reports and made them publicly available. But the scattered PDFs—often posted for only a few states at a time—provided only small snapshots from the vast trove of data HHS was using behind the scenes.

    This past Friday, the Department of Health and Human Services (HHS) began releasing all national COVID-19 reports and the data behind them. Now officially called “COVID-19 Community Profile Reports,” the reports are expected to be released as PDFs and spreadsheets every day.

    I asked Liz Essley Whyte why this release—one that she’s spent months pushing for—is so important. Here’s what she said:

    This release has local data that is so important for helping people make daily decisions about what’s safe. It also gives us the same picture of the pandemic that our federal government does, allowing us to weigh its response. It’s data that was assembled with taxpayer dollars and that affects everyone’s lives, so it was past time for it to be made public. I’m very glad it’s out there now. I think if it’s pursuing full transparency the White House should also make public the policy recommendations it gives to states weekly in the governors’ reports, alongside this helpful data.

    Whyte has also provided a tour of the information available in these reports, specifically geared towards local journalists who might want to use them.

    Here’s my own tour, a.k.a. why I’m excited about this new dataset:

    • Data on metropolitan areas: Other sources were compiling state- and county-level data prior to Friday, but standardized data on how COVID-19 is impacting America’s cities were basically impossible to find. This new dataset includes information on over 900 metropolitan and micropolitan areas, making it much easier to compare outbreaks in urban centers.
    • Standardized data: One of the biggest challenges for COVID-19 data users has been a lack of consistency. Some states report every day of the week, some skip weekends. Some states report their tests using one unit, some report using another. Some states include antigen tests in their numbers, some don’t. And so on. But the HHS can smooth out these inconsistencies internally, as national testing laboratories and state public health departments are all required to report in the same way. What I’m saying is, this new report allows us to do something we haven’t been able to reliably do since the start of the pandemic: compare testing numbers across states.
    • Major metrics in one place: Before Friday, if I wanted case and death numbers by county, I’d go to the New York Times, while if I wanted testing numbers by county, I’d go to the Center for Medicare & Medicaid Services. The scattered nature of pandemic reporting has led researchers and journalists to cobble together stories from multiple disparate sources; now, we can get three major metrics in one easy place. (This data reporter loves to only have one Excel spreadsheet open at a time.)
    • Contextual data built in: Not only does this new dataset include several important metrics in one place, it also contextualizes those metrics with key demographic information. For each state, county, and metro area in the dataset, numbers such as the share of this region living without insurance and the share of the region over age 65 are included right next to that region’s COVID-19 metrics. Two indices that indicate the region’s demographic vulnerability to the virus are also included: the CDC’s Social Vulnerability Index and the Surgo Foundation’s COVID-19 Community Vulnerability Index. I covered both in my November 29 issue.
    • Rankings for policymakers: In addition to raw counts of cases, deaths, and tests, the Community Profile Reports include calculated values that make it easy for local leaders to see how their communities compare. The reports rank states according to their cases per 100,000 population, positivity rate (for PCR tests), hospital admissions, and other metrics. They highlight key cities that demand attention and aid, such as Phoenix, Arizona and Nashville, Tennessee. They even forecast death totals based on current case counts—a morbid metric, but a useful one nonetheless.
    • More transparency: Like the facility-level hospitalization dataset released last week, the Community Profile Reports signify that the HHS is finally stepping up to provide the American public with the information that informs key public health decisions. The absence of national data during this pandemic was never meant to be filled permanently by journalists or volunteer data-gatherers—the federal government is built for this work. Journalists are, instead, built to watch this work closely and hold it accountable.

    In the agency’s Friday press release, HHS states:

    HHS believes in the power of open data and transparency. By publicly posting the reports that our own response teams use and by having others outside of the federal response use the information, the data will only get better.

    As of Saturday night, the dataset has already been downloaded nearly 6,000 times. That’s nearly 6,000 people who can use these data and make them better—and the number will only grow.

  • Federal data updates, Dec. 13

    Rounding out the week with a couple of updates on federal data, unrelated to hospitalizations and vaccines.

    • New app for testing data: The Centers for Disease Control & Prevention (CDC) have developed an app called SimpleReport, which allows COVID-19 test providers to quickly report data to their local public health departments. An assisted living center in Tucson, Arizona was the first to pilot the app this week. The center’s Community Director said this app helped her quickly file data that would otherwise need to be entered in three different places.
    • CMS proposes that providers build standard databases: This past Thursday, the Centers for Medicare & Medicaid Services (CMS) announced a new rule to streamline data sharing between the agency and individual healthcare providers. Under this rule, providers would need to build application programming interfaces, or APIs. APIs are essentially data-sharing systems that provide a standardized format for information. Such standardization, CMS claims, would make it easier for patients to get medical treatments and prescriptions authorized by Medicaid.
    • Bill to make federal court filings free passes the House: PACER, or Public Access to Court Electronic Records, is an antiquated federal database of court filings which journalists and other researchers must pay to use. It costs 10 cents a page to access court dockets and other documents through PACER—and since court documents can get long, that cost adds up. The Open Courts Act, a bill which would make PACER free to the public, passed in the House of Representatives this past week. It now heads to the Senate. This bill may not be directly COVID-related right now, but I anticipate that journalists will be covering COVID-19 lawsuits for years after the pandemic ends.
  • Federal data updates, Nov. 22

    America’s federal public health agencies are busy in the lead-up to Thanksgiving, as are the researchers and volunteer networks filling those agencies’ information gaps. Here are three major updates:

    • CDC’s COVID Data Tracker now reports more county-level data: Since it was first published in the spring, the CDC’s COVID-19 data dashboard has included cases and deaths by U.S. county, relying upon data compiled by USA Facts and verified by the agency. As of yesterday, the county dashboard now also reports total PCR tests and test positivity. Testing data have previously been available directly from the HHS (state-level) and the Center for Medicare & Medicaid Services (county-level), but the CDC dashboard is far more accessible. Users can select a specific county and see a variety of trends in cases, tests, and deaths. The data from this dashboard aren’t yet available for download; I’ll report back if this changes.
    • Pharmacies will be able to distribute COVID-19 vaccinesLast week, the HHS announced that the agency has set up partnerships with both national pharmacy chains and networks representing smaller pharmacies in order to broadly distribute COVID-19 vaccines as they become available. (Pfizer applied for Emergency Use Authorization this past Friday.) According to the HHS, these partnerships cover “approximately 60 percent of pharmacies throughout the 50 states, the District of Columbia, Puerto Rico, and the U.S. Virgin Islands.” The press release does not mention how these pharmacies will be plugged into their respective state vaccine registries.
    • How state COVID-19 dashboards are faringAlthough many states are reporting more COVID-19 data than they were last spring, their dashboards are overall still not conveying some key metrics, according to a new report from Resolve to Save Lives. This research group, a nongovernmental initiative run by the global health organization Vital Strategies, first reviewed state dashboards in July. (See my first issue for more details.) The new report—along with an interactive map—reflects improvements that states have made since the summer while highlighting what crucial public health information is still missing. Case investigation and contact tracing are two key areas where “data… remained largely unavailable.”
  • Federal data source updates, Nov. 8

    As cases spike, the Department of Health and Human Services (HHS) is focusing on rapid testing as a means to control the pandemic. But data on this type of testing continue to be widely unavailable.

    • HHS funds new COVID-19 testsOn October 31, HHS and the Department of Defense announced a $12.7 million contract with InBios International, a Seattle-based diagnostic testing company. The contract aims to help InBios increase its production capacity for two COVID-19 tests: a rapid antigen test called the SCoV-2 Ag Detect Kit and an antibody test called the SCoV-2 Detect IgM/IgG Food & Drug Administration (FDA).
    • HHS distributes antigen tests to HBCUs: At the end of September, the Trump administration announced that Historically Black Colleges and Universities (HBCUs) would be one category of priority sites for the distribution of Abbott BinaxNOW antigen tests, of which the administration has purchased 150 million. This promise is now coming to fruition; HHS announced on October 31 that 389,000 BinaxNow tests have been distributed to 83 HBCUs in 24 states, at no cost to the schools. How these schools will use the tests and report their testing data, however, remains to be seen.
    • FDA reminds antigen test providers to use them properly: The FDA issued a letter to clinical laboratory staff and health care providers on November 3, reminding them that antigen tests may incur false positives when the instructions for these tests’ use are not correctly followed. FDA recommendations include using antigen tests for symptomatic individuals, handling tests correctly, and using PCR tests to confirm results in low incidence counties. As I’ve discussed in this newsletter before, incorrect use of antigen tests may lead to misleading results that waste clinical resources or instill false confidence in people who receive false negatives.
    • HHS needs better testing oversight and data: Two new articles in STAT News this past week have discussed COVID-19 test regulation and reporting. An investigation by Kathleen McLaughlin finds that laboratory developed tests, diagnostic tools developed by and for specific facilities, fall in a “regulatory gray area” which makes it easy for innacuracies to slip past the FDA and HHS. Meanwhile, an op-ed by OB-GYN Joia Crear-Perry points out the public health danger in allowing demographic data on testing to be lost when rapid tests are not incoporated into reporting pipelines.
  • “Is Dr. Anthony Fauci on Cameo?”

    “Is Dr. Anthony Fauci on Cameo?”

    NIAID Director Dr. Anthony Fauci testifies before House Select Subcommittee on the Coronavirus Crisis on July 31. Screenshot retrieved from the hearing’s livestream.

    In the most recent episode of comedy podcast My Brother, My Brother and Me (approx. timestamp 23:50), youngest brother Griffin McElroy solemnly asks, “Is Dr. Anthony Fauci on Cameo?”

    McElroy’s question, asked in the context of a rather silly and unscientific discussion on contaminated basketballs, refers to a video-sharing service in which fans can pay celebrities to send personalized messages. Dr. Fauci is, of course, not on Cameo. But he did make a public appearance this past Friday: he testified before the House Subcommittee on the Coronavirus Crisis. This was Dr. Fauci’s first Congressional appearance in several weeks; Democrats have claimed that the White House blocked him from testifying earlier in the summer.

    Dr. Fauci was joined on the witness stand by Centers for Disease Control and Prevention (CDC) Director Dr. Robert Redfield and Assistant Secretary for Health Admiral Brett Giroir, who leads policy development at the Department of Health and Human Services (HHS). All three witnesses answered questions about their respective departments, covering COVID-19-related topics from test wait times to the public health implications of Black Lives Matter protests.

    For comprehensive coverage of the hearing, you can read my Tweet thread for Stacker:

    But here, I will focus on five major takeaways for the COVID-19 data world.

    First: the results of scientific studies on the pandemic are publicly shared. In his opening statement, Dr. Fauci cited four top priorities for the National Institute of Allergy and Infectious Diseases (NIAID): improving scientific knowledge of how the novel coronavirus works, developing tests that can diagnose the disease, characterizing and testing methods of treating patients, and developing and testing vaccines. The Congressmembers on the House subcommittee were particularly interested in this last priority; Dr. Fauci reassured several legislators that taking vaccine development at “warp speed” will not come at the cost of safety.

    Rep. Jackie Walorski, a Republican from Indiana, was especially concerned about Chinese interference in vaccine development. She repeatedly asked Dr. Fauci if he believed China was “hacking” American vaccine research, and if he believed this was a threat to the progress of such work. Dr. Fauci replied that all clinical results from NIAID work are shared publicly through the usual scientific process, to invite feedback from the greater medical community.

    Clinical studies in particular are listed in a National Institutes of Health (NIH) database called ClinicalTrials.gov. On this site, any user can easily search for studies relating to COVID-19; there are2,844 listed at the time I send this newsletter256 of these studies are marked as “completed,” and two of those have results posted. I see no reason to doubt that, if Rep. Walorski were to visit this database in the coming months, she would find the results of vaccine trials here as well.

    Dr. Fauci also publicized the COVID-19 Prevention Network, a website on which Americans can volunteer for vaccine trials. According to Dr. Fauci, 250,000 individuals had registered by the time of the hearing.

    Second: nursing homes are getting COVID-19 antigen tests, big time. Dr. Redfield, Admiral Giroir, and several of the House representatives at the hearing highlighted a recent initiative by HHS to distribute rapid diagnostic COVID-19 tests to nursing homes in hotspot areas. In his opening remarks, Dr. Redfield stated that, by the end of this week, federal health agencies will have delivered “nearly one million point-of-care test kits to 1,019 of the highest risk nursing homes, with 664 nursing homes scheduled for next week.”

    The tests being distributed identify antigens, protein fragments on the surface of the novel coronavirus. Like polymerase chain reaction (PCR) tests, antigen tests determine if a patient is infected at the time they are tested; unlike PCR tests, they may be produced and distributed cheaply, and return results in minutes. Antigen tests have lower sensitivity, however, meaning that they may miss identifying patients who are in fact infected.

    The antigen test distribution initiative is great news for the nursing homes across the country that will be able to test and treat their residents more quickly. But from a data perspective, it poses one major question: how will the results of these tests be reported? While antigen tests may be diagnostic, their results should not be lumped in with PCR test results because they have a different accuracy level and serve a different purpose in the pandemic.

    The Nursing Home COVID-19 Public File, a national dataset run by the Center for Medicare and Medicaid Services, reports “confirmed” and “suspected” COVID-19 cases in the nation’s nursing homes. The dataset does not specify what types of tests were used to identify these cases, or the total tests conducted in each home. Similarly, state-reported datasets on COVID-19 in nursing homes typically report only cases and deaths, not testing numbers. And, as of the most recent COVID Tracking Project analysis, the only state currently reporting antigen tests in an official capacity is Kentucky. But more states may be including antigen test numbers in their counts of “confirmed cases” or “molecular tests,” as several states lumped PCR and serology tests this past spring. As hundreds of nursing homes across the country begin to use the antigen tests so graciously distributed by the federal government, we must carefully watch to identify where those numbers show up.

    Third: Admiral Giroir doesn’t know what data his agency publishes.

    If you watch just five minutes from Friday’s hearing, I highly recommend the five minutes in which Rep. Nydia Velázquez (a Democrat from New York) interrogates Admiral Giroir about COVID-19 test wait times. Here’s my transcript of a key moment in the conversation:

    Rep. Velázquez: Dr. Redfield, I’d like to turn to you. Does the CDC have comprehensive information about the wait times for test results in all 50 states?

    Dr. Redfield: I would refer that question back to the Admiral.

    Rep. Velázquez: Sir?

    Admiral Giroir: Yes, we have comprehensive information on wait times in all 50 states, from the large, commercial labs.

    Rep. Velázquez: And do you publish this data? These data?

    Admiral Giroir: Uh… we talk about it. Always. I mean, I was on… I was with 69 journalists yesterday, and we talk about that frequently.

    He went on to claim that decisionmakers at the state and city level have data on test wait times from commercial labs. But where are these data? HHS has collected testing data since the beginning of the pandemic; these data were first published on a CDC dashboard in early May and are now available on HealthData.gov.

    The HealthData.gov dataset includes test results from CDC labs, commercial labs, state public health labs, and in-house hospital labs. For each test, the dataset includes geographic information, a date, and the test’s outcome. It does not include the time between the test being administered and its results being reported to the patient. In fact, that “date” can either be a. the date the test was completed, b. the date the result was reported, c. the date the specimen was collected, d. the date the test arrived at a testing facility, or e. the date the test was ordered. So, if there’s another, secret dataset which includes more precise dating, I personally would love to see it made public.

    Also, who are those 69 journalists, Admiral Giroir? How do I join those ranks? I have some questions about HHS hospitalization data.

    Fourth: everyone wants to reopen schools. Dr. Redfield said, opening schools is “in the best public health interest of K-12 students.” Dr. Fauci said, schools should reopen so that schools can access health services, teachers can identify instances of child abuse, and to avoid “downstream unintended consequences for families.” Rep. Steve Scalise, the subcommittee’s Ranking Member (and a Republican from Louisiana, home to one of the country’s most annoying COVID-19 dashboards), said, “Don’t deny these children the right to seek the American dream that everybody else has deserved over the history of our country.” Rep. James Clyburn, the subcommittee’s Chair (a Democrat from South Carolina), said that school reopening must not be a “one size fits all approach,” but it should be done for the good of students and their families.

    Clearly, reopening schools is a popular political opinion. But does the country have the data we need to determine if schools can reopen safely? Reopening, as Dr. Fauci explained in response to an early question from Rep. Clyburn, is most safely done when COVID-19 is no longer circulating widely in a community. School districts can determine whether the disease is circulating widely through looking at case counts over time, but for those case counts to be accurate, the region must be doing enough testing and contact tracing to catch all cases.

    And testing data, while they are certainly collected at the county and zip code levels by local public health departments, are not standardized at all. HHS doesn’t publish county-level testing data. Nor does the COVID Tracking Project. This lack of standardization for any geographic region smaller than a state is troubling, as public health leaders and journalists alike cannot currently assess the scope of local outbreaks with any kind of broad comparison. To put it simply: I would love to do a story on how many school districts can safely reopen right now, based on their case counts and test metrics. But the data I would need to do this story do not exist.

    Fifth: all data are political; COVID-19 data are especially political. I know, I know. Data have been political since humans started collecting them. One of America’s most comprehensive data sources, the U.S. Census, started as a way to enforce the Three-Fifths Compromise.

    But watching this Friday’s hearing hammered home for me how the mountains of data produced by this pandemic, coupled with the complete lack of standards across the institutions producing them, has made it particularly easy for politicians to quote random numbers out of context in order to advance their agendas. Rep. Clyburn said, “At least 11 states… are currently performing less than 30% of the tests they need to control the virus.” (Which states? How many tests do they need to perform? Where di that benchmark come from? What other metrics should the states be following?) And, on the other side of the aisle, Rep. Scalise held up a massive stack of paper and waved it right at the camera, claiming that the high number of tests that have been conducted in this country is evidence of President Trump’s national plan. (But how many tests have we conducted per capita? What are the positivity rates? What statistics can we actually correlate to President Trump’s plan?)

    In fact, after the hearing, the White House put out a press release claiming that America has “the best COVID-19 testing system in the world.” The briefing includes such claims as, “the U.S. has already conducted more than 59 million tests,” and, “the Federal Government has distributed more than 44 million swabs and 36 million tubes of media to all 50 States.” None of the statistics in the briefing are put into terms reflecting how many people have actually been tested, compared to the country’s total population. And none of the statistics are contextualized with public health information on what targets we should be meeting to control the pandemic.

    The experts who might have been consulted on that brief—Dr. Fauci, Dr. Redfield, and Admiral Giroir—all sat before Congressional Representatives on Friday morning, quietly nodding when Representatives asked if their respective departments were doing everything possible to protect America. If they had answered otherwise, they may not have returned for future hearings. The whole thing felt very performative to me: the Democrats threw veiled jibes at President Trump, the Republicans bemoaned China and Black Lives Matter protests, and Dr. Fauci fact-checked such basic statements as, “Children are not immune to COVID-19.”

    And almost everyone in the room—including all three witnesses—removed their mask when they spoke.

    If Dr. Fauci were available to commission on the video service Cameo, I would pay him good money to send a personal message to every Congressmember on that subcommittee telling them, confidentially, exactly what he thinks of their questions. And then I would ask him for Admiral Giroir’s personal cell phone number.