ALBANY, N.Y. (NEWS10) — The Attorney General’s Office continues to investigate New York’s COVID-19 response in nursing homes and reports that publicly announced death numbers were short by about 50%. NEWS10 is working on an investigation of our own to find out why Cuomo administration leaders claim they couldn’t immediately release death totals and we took a deeper dive into all the ways other states and the federal government appear to collect that information, verify and share it fairly easily.
New York nursing homes and hospitals say although the COVID-19 pandemic is a massively difficult undertaking, reporting info on infectious disease spread is nothing new to them. In fact, the Health Electronic Response Data System, or HERDS, that New York uses has been around since 2002 and activates any time there’s a health emergency or outbreak.
“It’s a system that we’re used to using, so it wasn’t hard to be able to ramp up those responses,” says Kassandra Foley, Director of Infection Prevention for St. Peter’s Health Partners.
A mandatory COVID survey for all health facilities was added to HERDS in late March 2020. The survey was updated in April and in May, the DOH asked all 613 nursing homes, 544 adult care facilities, and more than 200 hospitals to submit retrospective data back to the start of the pandemic. Healthcare providers say they enter incredibly detailed demographic information on their patients.
“Every admission that comes into the hospital, we include where they came from, so where they admitted from home, from the community, from an assisted living facility, from a nursing facility. Unfortunately, when someone passes away in the hospital, we would also include their demographics information and what their comorbidities were,” says Foley.
“There was a field for total deaths and then it was broken down to deaths by facility and deaths in the hospital,” says Amy Krause of the WeCare Corporation, which operates the Diamond Rehabilitation and Nursing in Troy.
“Keep in mind the data we’re providing to the state is the same as the information we’re relaying to local health departments, so it’s fairly easy to cross-check information,” says Foley.
So then, why didn’t New York State use the information they received to report complete nursing home resident death totals to include in facility, out of facility, and presumed COVID-19 deaths until after Attorney General Letitia James’s COVID-19 nursing home response review that was released January 28? A Department of Health statement to NEWS10 sent February 26 echoes Gov. Andrew Cuomo and his administration’s early claims that their public reporting had to separate nursing home residents who died in hospitals, because they couldn’t immediately verify the information to avoid double counting.
“When they said that there was undercounting, that is just factually inaccurate, and we wanted to get that out. Governor, as you have said in all these presentations, reporting the number of deaths is always the hardest number to report out there and we wanted to be sure that those numbers were accurate,” said Department of Health Commissioner Howard Zucker in a January 29 news conference.
We asked the DOH to respond again to what we now know about how both hospitals and nursing homes report deaths to HERDS. While we waited, we asked other states how they were able to report long-term care fatalities (LTCF). All five surrounding states responded the coronavirus extensions to their infectious disease tracking systems do not separate nursing home residents who die in hospitals.
A New Jersey State Health Department representative tells NEWS10 it has a list of infectious diseases to be reported to the Communicable Disease Reporting and Surveillance System (CDRSS). The state has used the CDRSS since 2005 and positive coronavirus test results have been tracked in the system since at least April 2020.
Long-term care facilities are also required to fill out a Long-Term Care Outbreak Survey any time they have more than one COVID case, the representative says. Facilities are required to include resident deaths that occur on their premises and residents who passed after being transferred to a hospital.
Hospitals and health departments also report COVID confirmed or suspected deaths to the state and the DOH then matches and confirms those records against death certificates in its Electronic Death Registration System. New Jersey law was amended in January 2004 to introduce NJ-EDRS and further amended again to make it the primary death certificate reporting method by 2015.
New Jersey’s COVID-19 Dashboard is updated daily and includes long-term care data showing currently active infections by facility and cumulative death and case totals, in staff and in residents.
Massachusetts set out to create its own communicable disease tracking system and developed the Massachusetts Virtual Epidemiologic Network (MAVEN) in 2005 before it was later launched in 2006. MAVEN tracks around 90 reportable infectious diseases and conditions through electronic lab reports and local health department reporting.
With the passage of Chapter 93 laws in June 2020 detailing standards for long-term care COVID data reporting, the state contracted REDCap, a national survey tool developed at Vanderbilt University. A Massachusetts Department of Public Health representative describes REDCap as “a conduit for reporting a subset of information into MAVEN, but MAVEN is the official repository for surveillance information related to COVID-19 cases and contacts.”
Long-term care facilities, assisted living residences, and rest homes all self-report their resident and staff cases and deaths to REDCap. The DPH representative says requirements dictate they must count deaths of all residents who die in the facilities, residents transferred to hospitals, those who died with an active COVID-19 infection, and those who died even after recovering from coronavirus.
Vermont passed the state’s Reportable and Communicable Diseases Rule in April 2019. Any case of a reportable disease, syndrome, or treatment on the state list or any major public health threat, such as COVID-19, must be reported to the Vermont Department of Health Epidemiology Program electronically or in writing within 24 hours. Presumed or confirmed positive lab results must also be reported to the DOH immediately.
Vermont is also the only local state listed by the CDC as using the National Electronic Disease Surveillance System (NEDSS) Base System (NBS). NBS is “a CDC-developed integrated information system that helps local, state, and territorial public health departments manage reportable disease data and send notifiable disease data to CDC.” The CDC says all 50 states and Washington, D.C. have NEDSS-compatible disease surveillance systems, and the base system is an available resource to initiate electronic surveillance and reporting, but not required.
Vermont also counts its death totals through EDRS death certificates which are completed by a certified provider. The Vermont Department of Health works with medical examiners to confirm cause of death.
A DOH representative responded to NEWS10 requests for comment saying nursing home resident deaths are counted in two ways: how many people died in a long-term care facility, and how many residents total died, regardless of location of death? These numbers are then used to calculate the death rate per 10,000 Vermonters in the weekly data summary.
The representative says the Vermont Department of Health does not make public the number of long-term care facility deaths. They went on to say a person’s death is only counted towards long-term care facility totals if the person who died lived in a long-term care facility 14 days prior to their symptoms or a positive test. If the resident dies outside of the LTCF, the death will count as “associated to a LTCF, but the physical location of death will be marked as appropriate (usually inpatient at a hospital).”
If someone transfers out of an LTCF 14 days prior to their symptom onset or specimen collection and that person is not believed to have contracted COVID at the LTCF, then it would not be counted as an LTCF associated death, according to the spokesperson.
Pennsylvania patterns its electronic disease reporting after a CDC format called the National Electronic Disease Surveillance System (NEDSS). Mandatory reporting through Pennsylvania’s PA-NEDSS was first introduced as a law in May 2003 and took effect six months later.
Electronic lab reporting is facilitated through PA-NEDSS and data reporting vocabulary is also based on a CDC standard so information is universal. This makes it easier to facilitate data transfers between local health departments, according to the health department’s website.
Long-term care facility data is reported directly to PA-NEDSS and posted to the county breakdowns on the Pennsylvania Department of Health website. A representative says any person who dies from COVID-19 would have the address on their death certificate matched to their county and/or long-term care facility where they lived to be counted in LTCF totals.
However, the representative did go on to add that family members may enter a different permanent address on the official death registry. If that happens, their official death will count with the county of that address. The representative claims the change would not impact the LTCF death information.
Pennsylvania was not without scrutiny for its death data collection practices in the early days of the pandemic. Although the state’s EDRS launched in October 2016, reporting was not mandatory and a national audit of electronic death reporting systems by the Office of the Inspector General shows in 2017, neither Pennsylvania nor New York had fully rolled out their EDRS.
Training materials originally provided to prospective certified providers by Pennsylvania’s Department of Health in 2019 and obtained by NEWS10 only listed EDRS as the “preferred method” and many coroners and medical examiners chose to continue with the paper and mail-in format. EDRS was not mandatory until March 2020.
Due to mail delays and the additional time needed to communicate death certificates from certified providers to county health departments, and finally, to the state, local media outlets Spotlight PA and WHYY News marked the inaccuracies in the state’s publicly reported death data in the first wave of the coronavirus pandemic.
Since 1989, Connecticut law has required testing labs to report communicable disease results to the state. Diseases marked “Category 1” must be reported to the lab’s jurisdictional department of health on the day of “recognition or strong suspicion”, and COVID-19 was added to the Category 1 list in February 2020.
COVID hospitalizations were also added to the list in July 2020 and healthcare providers were required to notify via the Connecticut Electronic Diseases Surveillance System, according to the Department of Public Health. A DPH publication also shows in January 2021, COVID-19 and COVID hospitalizations were both moved down to “Category 2” as reporting guidelines changed. Category 1 diseases must now be reported to the state by phone and mail within 12 hours, while Category 2 disease notifications are only required to be mailed in within 12 hours.
Connecticut’s long-term care data shows the state lists the CDC’s National Healthcare Safety Network as its primary source for collecting information on case numbers and deaths among residents and staff. The Centers for Medicare and Medicaid Services in April 2020 mandated all the nation’s long-term care facilities report to the NHSN or else lose their funding.
The NHSN’s reporting guidance for COVID-19 pathways shows all facilities must include total resident deaths for any reason and as a subset, “the number of residents with COVID-19 who died in the facility or another location.”
However, Connecticut is behind the curve when it comes to reporting deaths electronically. Although the Connecticut DPH says all COVID-19 deaths are certified through the Office of the Chief Medical Examiner, the majority of death certificates are still filled out on paper. Governor Ned Lamont has made public statements admitting the system created a lag in COVID death reporting.
An OCME representative confirms although the state has offered an EDRS system for close to 10 years, only a few counties use it. The state started to enter past paper death certificates into the electronic system in June 2020, but COVID delayed efforts. The representative says the state is working to fully transition to EDRS sometime in 2021.
Since 2014, Connecticut has used the Connecticut Open Data Portal to share all government data collection, methods, and reportable information to the general public. Users can explore the COVID-19 dashboard and also access the raw data.
Unanswered questions for New York
All five surrounding states show they’re able to verify reported nursing home deaths by checking reports against addresses on death certificates, either on paper or electronically. New York has its own Electronic Death Registration System that Governor Cuomo signed into health law in September 2013. The NYSDOH announced the full EDRS rollout in August 2019, making all death certificate reporting mandatory through the state system.
So why doesn’t New York make any reference to verifying HERDS data against its own death certificate system? Or why not use a federal system like the NHSN that already mandates COVID-19 reporting directly from facilities?
A representative from the Department of Health responded Thursday saying:
HERDS (Health Electronic Response Data System) is a survey tool that the Department of Health has used throughout this pandemic to secure real-time public health information from long term care facilities and hospitals, and has been critical in guiding our public health response. The survey questions asked, and the information received, has evolved to continue to provide information for clinical purposes. While your reporting correctly identifies multiple data sets that capture the impact of this terrible virus, it also needs to take into account the varying levels of data provided, the intended purpose of that data, and the point in time it was received. What we’ve said before bears repeating today, the Department has taken great lengths to ensure accuracy in data reporting from multiple sources. Your report further verifies the complexity of that process.Gary Holmes
Department of Health Spokesperson
The representative then repeated the February 26 statement claiming the administration was busy correcting data entry errors, de-duplicating reports, and working on other accuracy-seeking efforts, which delayed accurate death data.
NEWS10 also asked the DOH for a response to a New York Times article which references sources claim members of the Cuomo administration intentionally altered nursing home fatality numbers to count resident hospital deaths away from the long-term care facility totals out of fear of the Trump administration. Holmes says the DOH and governor’s office responses remain the same.
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