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COVID-19 nursing home data 'isn't very helpful', experts say; more context, consistency needed

Intelligencer Journal - 5/31/2020

Dr. Janine Everett, director of the public health program at Franklin & Marshall College, who studies health disparities and inequities, said her initial assessment of COVID-19 long-term care facility data released by the state Department of Health last week is that it “isn’t very helpful."

The data lacks details, such as how many people were tested, how many beds each facility has and what the rate of infection is – contextual information that helps viewers understand the spreadsheet, she said.

“People are going to make unfair judgments with incomplete data,” Everett said.

The average person will look at the spreadsheet and pick out facilities that look like they’ve had a high number of infections or deaths, but without knowing the size of that facility and how many residents live there, the numbers can be misleading, Everett said.

For the past three months, information and data surrounding COVID-19 has been changing. The manner in which the information and data is revealed to the public by government agencies and policymakers has also been shifting, sometimes rapidly and with unclear explanations.

Deaths include residents who died at the facilities and residents of those facilities who died at a hospital, according to numbers from the Lancaster County coroner's office on Friday, May 29. St. John's Herr Estate, Faithful Living, Faith Friendship Villa and Country Meadows are not included in this chart because information about their number of residents was not readily available. The four facilities had 10 deaths, combined.* According to the Lancaster County coroner, Landis Homes had one death. However, the resident lived in the Residential Living area that is separate from the facility's main skilled nursing facility.

** click here to see the table on your phone

Inconsistent data

Over the past week alone, the Pennsylvania Department of Health has made multiple changes to data collection and reporting methods, and efforts to communicate those changes have led to more questions and, sometimes, backtracking by the department.

On Monday, May 18, the state announced changes to collection and reporting on mortality rate data with little explanation. Hours later, for the first time, the department quietly released a demographic breakdown of the state’s COVID-19 related deaths, leading to questions about how the information that was in some cases missing 50% of the data was suddenly complete.

The biggest point of confusion has surrounded the long-term care facility numbers released last week.

After weeks of pressure for the state health department to release cases and deaths associated with long-term care facilities, on May 19 the department released a downloadable spreadsheet with cases and deaths in close to 600 long-term care facilities throughout the state. Instantly, advocates and media began pointing out inaccuracies in the data – the news outlet SpotlightPA noted one facility had more deaths reported than they had beds.

An analysis by The Caucus, a publication of LNP Media Group, Inc., found 16 homes with discrepancies that were quietly adjusted by the department.

Kirkland Village, in Northampton, went from showing 44 resident cases, 10 employee cases and six deaths, to nothing being reported from that facility, according to a Caucus report on May 22. An update to the spreadsheet the same day the story was published showed that Kirkland had 49 resident cases, 10 staff cases and seven deaths.

The numbers reported by the state for Lancaster County did not exactly match the numbers county Coroner Dr. Stephen Diamantoni has reported to date -- especially for Conestoga View.

The state reports that Conestoga View has 34 deaths, while the coroner’s report last week had a total of 74 deaths for the facility. The state health department data for Conestoga View has not changed even after two updates.

In a process where information is being entered by many people, there are many data entry or analysis points where mistakes and discrepancies can occur, Everett, the F&M researcher, said.

The largest burden of creating “good” data falls on those who design and conduct the research, she said.

“...Are our questions abundantly clear and are they given a reasonable opportunity to respond,” Everett said. “Are the systems set up to receive their information set up in a way that minimizes the risk of error?”

According to Nate Wardle, a state health department spokesperson, the facilities are supposed to report their current and cumulative cases and death information daily to the state agency through a survey tool. However, due to an inconsistency in completeness of the data, the department decided to abandon the surveys and use their own internal database.

“Our goal all along is the use of data that is being reported by the facilities,” he said.

Although close to 95% of the state’s long-term care facilities are now reporting daily through the survey tool, information is still not consistent enough to use, Wardle said.

For now, the data is being extracted from a system called Pennsylvania National Electronic Disease Surveillance System (PA-NEDSS) -- where information is entered by hospitals, laboratories and public health departments to track infections. The department is alerted about deaths through a system called Electronic Death Registration System (EDRS) and is using case information in PA-NEDSS to confirm location, Wardle said.

On May 18, the department stopped reconciling data between the two systems for overall deaths and only using EDRS in order to get “as near to real-time information regarding people whose deaths have been attributed to COVID-19,” Wardle said at the time. The policy change did not extend to long-term care facility data released the following day.

Wardle said facilities have reached out about inaccurate data and the spreadsheet has been edited -- however, Wardle couldn’t say how many facilities have reached out and the spreadsheet does not note which data points have been changed.

Inaccuracies in data cause people to have low confidence in what they’re being told, Everett said.

“We don’t know if we can rely on this data, which is a really bad place to be,” she said.

Zachary Shamberg, president and CEO of the Pennsylvania Health Care Association, said on Thursday that the department has had over a week to correct the data, but it remains inaccurate.

Last week, Shamberg’s organization released a statement demanding the existing data be taken down and fixed -- even threatening legal action if ignored. Shamberg said the inaccuracies jeopardize the relationship providers had with families and “created panic and anger among family members, distrust among staff and frustration for providers.”

Shamberg said his organization has worked to help their 200-member nursing home facilities understand how to fill out the department’s survey, but initial struggles with logging into the system and unclear guidance has made it difficult, he said.

Difficulties aside, the survey tool should have never been implemented to begin with, he said, because providers were already submitting the same information into multiple daily and weekly reporting tools that the department has access to. “We have administrators and frontline staff spending hours reporting,” Shamberg said.

And PA-NEDSS is not an appropriate system to get this data from because nursing homes don’t report directly into the system, “in fact, they don’t have access to the NEDSS database,” according to Shamberg.

A nursing home administrator at Landis Homes said the facility reports daily to the state health department’s Knowledge Center, the department’s survey tool and weekly reports to the CDC. The facility said "the lab is responsible to report data into the PA-NEDSS," they do not.

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Deciphering the Acronyms

NEDDS (PA-NEDDS): National Electronic Disease Surveillance System

* The system allows for healthcare systems to report diseases and investigative findings to the Pennsylvania Department of Health.

EDRS: Electronic Death Registration System

* The system is used to electronically report deaths to the Pennsylvania Department of Health and for the department to register deaths.

Source: Pennsylvania Department of Health

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