Michael Lepore, PhD

Vice President, LiveWell Institute and Adjunct Assistant Professor of Health Services, Policy & Practice, Brown University

11th April 2020

COVID-19 cases have spread rapidly in care homes and other long-term care settings, quickly ratcheting up related death rates in these settings and inspiring spirited debate about the potential for public reporting of information about COVID-19 cases and deaths to help curb the virus’ spread. Internationally, public reporting about COVID-19 cases per geographic region (e.g., state, province, county) remains limited, which has deterred care home planning for the pandemic. In the United Kingdom, local data on numbers of confirmed COVID-19 cases have not consistently been made public, and this lack of systematic information sharing has reportedly limited the capacity of care homes to plan accordingly for testing of essential care home staff, for accessing vital personal protective equipment (PPE), and for ensuring ample health care support. Furthermore, in a few countries, the deaths in nursing homes were initially excluded from official counts, resulting in the underreporting of deaths from COVID-19.¹

In the United States, where market dynamics are heavily relied upon for shaping long-term care practices, in addition to reporting of COVID-19 cases in local geographic units, like towns and counties, debate is focused on public reporting of information about long-term care homes that have COVID-19 cases among residents or staff. Public reporting on the quality of care delivered and the clinical outcomes achieved in nursing homes has been standard practice in the United States since 2002, when the federal Centers for Medicare and Medicaid Services (CMS) initiated a national public reporting program that now reports numerous measures of care quality and outcomes to the public via the federal Nursing Home Five-Star Quality Rating System and the Nursing Home Compare website.² The value of public reporting for improving quality remains debatable, but research shows that nursing home public reporting is modestly effective at supporting quality improvement, partially by encouraging consumers to choose higher-quality providers and partially by incentivizing providers to improve quality.³  In this national context, some senators and other stakeholders are asking for data on COVID-19 cases in nursing homes to be made public.

This issue brief reviews the senatorial request to federal agencies for nursing home information on COVID-19 cases, examines how the request aligns with and differs from standard public reporting on nursing homes in the United States, explores some arguments against such public reporting, and provides an example of public reporting on COVID-19 cases in nursing homes in one state. Potential next steps for advancing the public reporting debate are also discussed.

Senators Request Information on COVID-19 Cases in Nursing Homes be Made Public

The rapid spread of COVID-19 cases in long-term care in the United States—including national reports of cases in 147 nursing homes on March 23³ and over 400 nursing homes on Mach 31⁵—has inspired proposals for public and timely reporting of COVID-19 cases in nursing homes. On April 2, Senators Robert P. Casey (D-PA) and Ron Wyden (D-OR) asked CMS and Centers for Disease Control and Prevention (CDC) to release real-time information about COVID-19 cases in nursing homes to the public:

At a time when this information could be vital to the health and safety of Americans, it is imperative that the list of facilities with a COVID-19 case, among residents and staff, be made public and shared with relevant health care providers, authorities and Congress on a real-time basis.  

The senators go on to explain that real time access to accurate information about COVID-19 cases among long-term care residents and staff could support key stakeholders—including nursing home residents, families, providers and policymakers—to respond in ways that reduce spread:

Information about COVID-19 diagnosis can be potentially life-saving for nursing home residents, first responders, local hospitals that might otherwise discharge patients to the nursing home and health professionals who work in nursing facilities and may be unaware of the need to take proper precautions to prevent the spread of the virus.

The senators also emphasize that the list be designed in a user-friendly format for nursing home residents and families and the general public, too: “CMS and CDC must convey this information in a manner that is easily accessible to nursing home residents, families and the community.”

In short, the senators request CMS and CDC make public a real-time and user-friendly list of facilities with COVID-19 cases to support informed decision-making that will reduce spread of the virus.

How Does the Senators’ Request Relate to Standard Nursing Home Public Reporting?

Overall, the senators’ request for user-friendly, public information about COVID-19 cases in nursing homes reflects key characteristics of CMS’s Nursing Home Compare program. However, several elements of their request differ substantially from the existing public reporting program, three of which are noted here. First, the real-time nature of the information requested by the senators is not aligned with standard nursing home public reporting processes, which often lag weeks-to-months behind real-time results. Second, the senators’ request is for information on all nursing homes with any—i.e., one or more—COVID-19 cases, but CMS censors public reporting of nursing home performance on measures, such as infection rates, when fewer than 30 long-stay residents or 20 short-stay residents have the outcome of interest (i.e., test positive). Third, the senators’ request is for information on the health status of both nursing home residents and staff, whereas current public reporting of health-related nursing home data is restricted to information about the residents. In summary, the senators’ request for easily digestible public information reflects standard CMS public reporting procedures, but the speed of public reporting requested by the senators is higher, the level of confidentiality is reduced, and the scope of information is expanded.

In addition to the aforementioned differences between current public reporting of nursing home data and the senators’ request, the senators also ask CMS and CDC to provide “a list of individuals or entities who have access to the list of facilities where a COVID-19 case has been identified”. That is, in addition to the list of facilities with COVID-19 positive cases, the senators want CMS and CDC to provide a list of the individuals who have access to the list of facilities with any COVID-19 cases. The purpose of this list is not specified in the senators’ letter; however, the implied feasibility of generating such a list indicates that a relatively small and knowable number of people are expected to currently have access to a national list of nursing homes with COVID-19 cases.

Some Arguments Against National Efforts for Public Reporting of COVID-19 Cases

The senators’ request represents a notable expansion in who has access to COVID-19 cases in nursing homes—from the list of people with current access, to the information being made public. Such an expansion has important and varied implications and faces criticism on several fronts. Some arguments against such public reporting efforts are noted below.

A primary argument against public reporting of COVID-19 cases in nursing homes is that such reporting is simply not a priority during this unprecedented crisis, when time and resources, including essential protective equipment, are limited, rationed, or completely unavailable. According to this perspective, commitment of time and resources needs to be made not to public reporting, but to protecting the lives of nursing home staff and residents, such as providing nursing homes the personal protective equipment that they need to survive, and supporting staff under unprecedentedly difficult and dangerous conditions. One concrete strategy is increasing investment in the frontline care workforce to ensure providers have the knowledge, skills, and materials that are vital during this pandemic.

One component of this argument against the focus on public reporting is the inability for COVID-19 positive cases to be identified in real time, because of delays in testing availability and delays in test results. Making COVID-19 testing and results readily available in nursing homes is necessary before real-time public reporting of COVID cases in nursing homes will be possible.

Another claim against the senators’ request is whether, given the limited value of national public reporting to improve outcomes,³ such an approach is effective at reducing the virus’ spread. Additionally, although public reporting is ostensibly not intended to shame nursing homes with undesirable outcomes, the potential for negative outcomes of public reporting—like increased stigma for the residents, families, and staff of nursing homes with high numbers of COVID-19 cases, or increased staff absenteeism or turnover in those settings—also must be considered. In some communities, staff have stopped showing up,⁶ requiring all of the residents to be relocated, a process that carries additional risks.⁷

A final argument against public reporting that must be considered in an era of mass shootings and our current atmosphere of fear, is that public reporting of sites with COVID-19 cases may increase the risk of shooters targeting facilities with high concentrations of positive patients or staff in the misguided hope that they can reduce the risk of viral spread. Even before the pandemic, active shooter guidelines were added to many long-term care staff training procedures.

Considerations for Next Steps

Some states are already harnessing data from nursing facilities to see if they can stop the pandemic’s spread within their borders. For example, Connecticut has made public substantial information about COVID-19 cases in nursing homes: On April 8, the state released data indicating that 83 of 215 nursing homes in Connecticut (39%) had at least one confirmed case of COVID-19, and a total of 660 nursing home residents with laboratory-confirmed COVID-19 had been identified. The state also issued a list of nursing homes with laboratory confirmed cases of COVID-19.

Whether Connecticut or other states’ similar information can be harnessed to stop the pandemic’s spread is unknown, but it could be a guidepost for the senators’ requested federal effort. For example, experiences of viral spread in nursing homes can be compared across states that have implemented public reporting, like Connecticut, and states that have not reported this information publicly.

Additionally, national leaders should learn from the experiences and perspectives of nursing home staff and residents in facilities that have already been publicly identified as having COVID-19 cases. Through these facilities’ experiences, leaders can see if such public reporting correlates with desired or adverse outcomes, such as staff turnover or absenteeism, social stigmatization, and/or mental distress. Instances of families pulling residents out of homes with identified positive cases, and other experiences of residents in these nursing homes, can also be assessed at the state level to inform national efforts.

Globally, public health, health and social policy, and health and social services leaders also can learn lessons from this debate regarding the potential risks and benefits of not only making information about COVID-19 cases within long-term care homes publicly available, but also about making information public about COVID-19 cases at broader community levels, like by town or county.

Conclusion

It’s understandable the United States senators’ push for public information on COVID-19 cases in nursing homes would receive some push back. This is an unprecedented time of crisis in which basic equipment is being rationed and death rates are soaring, and many wonder whether this request should be prioritized. On the one hand, the data could yield actionable results, while on the other, it presents serious implications for nursing home residents, family members, staff, and for their broader communities, including the larger health care systems in which nursing homes are embedded.

Before committing precious time and resources to national public reporting efforts, federal leaders should first look to see if state-based efforts yield actionable, desirable, results. There’s still plenty of room for debate, but with CMS and CDC slated to respond to the senators by April 16, the shape of a national plan may soon become clear.

References

¹Connolly, K. Care homes across globe in spotlight over Covid-19 death rates. The Guardian, April 9, 2020.https://www.theguardian.com/world/2020/apr/09/care-homes-across-globe-in-spotlight-over-covid-19-death-rates

²CMS.Nursing Home Compare. https://www.medicare.gov/nursinghomecompare/

³Werner, R., Stuart, E., & Polsky, D. Public Reporting Drove Quality Gains at Nursing Homes. Health Affairs, 29, no.9 (2010):1706-1713. https://www.ncbi.nlm.nih.gov/pubmed/?term=Public+Reporting+Drove+Quality+Gains+at+Nursing+Homes.+Health+Affairs%2C

⁴Sacchetti, M., & Whoriskey, P. “More than 140 Nursing Homes Have Reported Coronavirus Cases. Federal Officials Won’t Say Which Ones.” The Washington Post. WP Company, March 25, 2020. https://www.washingtonpost.com/us-policy/2020/03/25/nursing-homes-coronavirus-cases/.

⁵Strickler, L. “Number of Long-Term Care Facilities with COVID-19 Cases Tops 400 Nationwide.” NBCNews.com. NBCUniversal News Group, March 31, 2020. https://www.nbcnews.com/health/healthcare/number-long-term-care-facilities-covid-19-cases-tops-400-n1172516.

⁶Brown, K. “Nursing home patients moved after over a dozen workers skip shifts amid pandemic.” Los Angeles Times, April 8, 2020. https://www.latimes.com/california/story/2020-04-08/nursing-home-patients-move-to-new-facility

⁷Lepore, M. J., Yuen, P. K., & Zepeda, S. (2019). Nursing Home Facility-Initiated Involuntary Discharge. Journal of Gerontological Nursing, 45(8), 23-31. https://www.ncbi.nlm.nih.gov/pubmed/31355896

Suggested citation:

Lepore M (2020) Going Public? Reporting of COVID-19 Cases in Long-Term Care Settings. Article in LTCcovid.org, International Long-Term Care Policy Network, CPEC-LSE.