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On August 12, 2020, we launched the Long-Term-Care COVID Tracker, but the work of compiling the dataset began much earlier. In mid-April 2020, a team within The COVID Tracking Project started collecting long-term care data from every state that reported it. The aim of our work on long-term-care (LTC) data was to ensure that the pandemic’s impact on residents and workers in a broad range of LTC facilities was entered into the historical record.
Every Thursday evening until March 4, 2021, this dedicated team of volunteers gathered COVID-19 case and death data of long-term-care facility residents and staff from state and territory websites, recent press conferences and releases, and directly from state health department officials. We published this data every Friday as cumulative, current outbreak, and facility-level datasets. These datasets are available for download on our Download the Data page and, for each state and jurisdiction, on the Data by State pages.
These datasets aim to document facilities for seniors like nursing homes, assisted living facilities, and residential care homes. The data excludes, when possible, facilities not specifically for the elderly, like chemical dependency residential treatment centers, behavioral health residential facilities, and intermediate care facilities for individuals with intellectual disabilities.
Reporting standards vary drastically across the nation, and many states share data that’s difficult to find, challenging to export, or unavailable without a direct relationship with the state. Some states report cumulative cases and deaths, while others report only current outbreaks. Every state defines an outbreak in a different way. Despite these variations, we’ve done our best to represent the scale and scope of the pandemic within these communities.
Below, you’ll find a detailed long-term-care annotation set that describes these variations, offering insight into the specifics of each state’s long-term-care reporting practices. If you are working to investigate one state’s specific handling of COVID-19, our annotations will help you to understand exactly how that state defined its data. Similarly, if you are working on a national analysis, this research will guide you to states with comparable data reporting practices and warn you about the states where comparisons cannot be easily made.
In addition to making this annotation set available for download, we’ve also used this research to produce summaries that accompany each state’s data. On each state’s long-term-care data page, you’ll find notes that explain the intricacies of what they report, like what kinds of long-term-care facilities were included in their data at the time of our collection, and also documentation of reporting anomalies that occurred.
We hope this annotation set will position researchers and policymakers with the context needed to produce sound analyses of long-term-care data and might help to expose the vast differences in state-level data reporting.
See also our Frequently Asked Questions about Long-Term-Care data.
Common terms you’ll find throughout the tracker:
- Long-term care: A broad term that includes all types of facilities that provide housing and care to seniors and others.
- Cumulative: COVID-19 total data within the time frame of the date of reporting and the reported collection starting date. States vary in their reported cumulative data start date.
- Current outbreaks: A COVID-19 outbreak is reported when the first COVID-19 case (or cases) is identified in a facility. This outbreak is considered closed once a specified time period (28 days, 14 days, etc.) has passed without the discovery of a new case.
- Aggregate: For states who report current outbreaks but not cumulative data, CTP carries the highest reported outbreak case or death total. Due to outbreak reporting, CTP’s aggregated cumulative data for these states under-reports actual cumulative totals.
- Probables: Probables are cases or deaths reported by states, where a person had symptoms of COVID-19 but no positive laboratory COVID-19 test. Reporting differs by state about which symptoms constitute a probable case. For probable deaths, reporting differs by pre-mortem symptoms, post-mortem health signifiers, and health officials reporting the death.
- Nursing Homes: Includes both skilled nursing facilities and nursing facilities. Skilled nursing facilities are those that participate in both Medicare and Medicaid. Nursing facilities are those that participate in Medicaid only. Nursing homes primarily engage in providing residents skilled nursing care and related services for residents who require medical or nursing care and rehabilitation services for the rehabilitation of injured, disabled, or sick individuals.
- Assisted Living Facilities: A facility that provides housing and meals, personal care assistance and other supportive health services to promote resident independence. States generally regulate these facilities.
- Lumped or Other Facilities: This category shows data from states that have not broken down their data by facility type, so it might include data from nursing homes and assisted-living facilities. It also includes some congregate living facilities for older adults that are neither nursing homes nor assisted-living facilities.
At its core, long-term-care outbreak data provides a way to understand how many staff and residents currently have COVID-19 at a particular point in time.
For example, one resident or staff COVID-19 case at a facility in New Jersey triggers an “active outbreak” status. If 28 days pass without an additional case, that outbreak is considered closed. The challenge is that most states report and define outbreaks differently. In contrast to New Jersey, Iowa requires three resident or staff cases to trigger an “active outbreak” and that outbreak is considered closed if 14 days pass without an additional case. These contrasting definitions make it challenging, and in many cases impossible, to compare COVID-19’s impact across state lines using outbreak data.
An additional complication is that many states report only a subset of outbreak cases and deaths. For example, Ohio’s outbreak definition is the same as New Jersey’s, but Ohio only displays cases from the past week while New Jersey displays data from the entirety of the current outbreak.
We annotated how states report outbreaks differently, as seen below. These annotations guide users through our Outbreak Dataset. Because of the wide variation in outbreak definitions, this dataset is most useful at the individual state level. However, if you want to compare outbreaks between states make sure to check the column labeled “Which states you can compare to in the outbreak dataset?” There, you’ll find a list of states that reported COVID-19 outbreak data according to the same criteria.
Team Leads: Artis Curiskis and Kara Oehler
Deputy Lead: Aarushi Sahejpal
Data Visualizations: Conor Kelly and Sarah McLaughlin
Data Team: Alejandra Arevalo, Aliya Uteuova, Annie Rydland, Bob Berger, Caitlin Glennon, Chava Gourarie, Damian Gray, Danielle Bloch, Denise Heitzenroder, Elah Feder, Elise Hadley, Emma Rubin, Emily Temple-Wood, Eva Sher, Evan Sorenson, Glen Johnson, Hannah Cummins, Hannah Hoffman, Isha Pasumarthi, Jackie Tennett, Jaclyn Jeffrey-Wilensky, J. Albert Bowden II, Jake Burns, Javier E Thomas, Jeffrey Ndubisi, Jess Engebretson, Jesse Anderson, Jill Shumann, Julia Hill, Kayleigh Van Poolen, Kendra Redmond, Kragh Hertel, Lauren Bradley, Leslie Heyison, Matthias Shapiro, Meghan Burks-Lenz, Michael Spicer, Natasha Kanagat, Nathanael Roy, Pat Kelly, Patrick Denenea, Rick Palmer, Tara Devlin, Terra July Riley, Sarah Anderson, Simon Morrow, Stacey Rupolo, Steve Thomas, William John Condon, and Will Jaw.
Contributors: Aarushi Sahejpal, Alexis Madrigal, Amanda French, Caroline Dulaney, Carol Cronin, Ciara McCarthy, Conor Kelly, Danielle Bloch, Deirdre Kennedy, Elizabeth Eads, Elliott Klug, Erin Kissane, Harrison Frank, Jessamine Fitzpatrick, Jess Engebretson, Jessica Malaty Rivera, Jonathan Gilmour, Josh Zarrabi, Jordan Gass-Poore’, Kevin Miller, Laura Bult, Judith Oppenheim, Julia Kodysh, Júlia Ledur, Lindsay Muscato, Peter Walker, Rowan Moore Gerety, Ryan Kailath, Sara McCrea, Sara Simon, Sarah Hoffmann, Sarah McLaughlin Theo Michel, Whet Moser, and Zach Lipton.