Elder Advocates Want Better Disclosure of Pandemic Data

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Health authorities discourage social gatherings as a way to slow the spread of the virus that is responsible for COVID-19. Large groups of people in workplaces and schools also increase viral transmission, as governments discovered when newly opened schools closed after witnessing a spike in new COVID-19 cases.

In some settings, including nursing homes and other long-term care facilities, closing the facility and sending residents home to guard against transmission of the virus isn’t an option. The residents of nursing homes and long-term care facilities are home. They often have nowhere else to go.

Advocates for disabled and elderly patients in need of long-term care are arguing that states should make more data available about infection rates within facilities. That information can help families decide how well a facility is coping with the infection risk as compared to other facilities in the same area.

Fortunately, a regulation that took effect this summer requires nursing homes that are certified to accept Medicare and Medicaid to report information about COVID-19 cases to patients and their families or representatives. That information is publicly available.

The federal regulation does not apply to facilities that do not accept Medicare or Medicaid. While a large majority of nursing homes accept Medicare patients, long-term care facilities that do not provide nursing care generally depend on private payments. Whether residents and family members can learn about COVID-19 infection rates in those facilities generally depends on state law.

State Disclosure Laws

States have been slow to require reporting. As of April, “36 states were reporting some level of data about coronavirus cases and deaths in long-term care facilities, with wide variation in types of data being reported, long-term care facility definitions, inclusion of residents/staff, and frequency of updates.” Only nine states reported “fully comprehensive data on cases and deaths at the facility level.”

Some states are responding to concerns that insufficient information has been made available to consumers. In Virginia, for example, outbreaks of COVID-19 in assisted living centers were not made public until mid-June. The legislature recently passed legislation requiring the state to disclose the name of each facility where a resident has been infected, the number of confirmed cases, and the number of deaths.

Until recently, Kansas made public reports of outbreaks affecting 20 or more persons. The Kansas public disclosure law applies to any business that suffers an outbreak, not just care facilities. Universities and meatpacking plants have recently made reports pursuant to the public disclosure law, although long-term care facilities represent the bulk of the list.

Businesses argued that the Kansas disclosure requirement was unfair because it spanned a 28-day period. If there were 19 cases in a short period of time that were no longer active, a new case within that 28-day window would require public disclosure of the outbreak.

In response to those complaints, Kansas changed the rule so that only cases occurring within the past 14 days would trigger public disclosure. However, Kansas also lowered the threshold for public disclosure to 5 cases within that 14-day period.

Advocates for residents want Kansas to go further. Rocky Nichols, executive director for Disability Rights Kansas, would like Kansas to join Mississippi in making a public report available every time a resident or staff members tests positive for COVID-19 in a nursing home, personal care home, or residential care facility.

Benefits of Transparency

Owners of care facilities are concerned that disclosing COVID-19 cases might frighten residents or their family members or residents. Disclosure might also hurt a facility’s revenue by discouraging incoming residents from moving into a facility that has suffered a spread of COVID-19 cases.

Facilities that take strong action to protect other patients when a COVID-19 infection is reported might have a legitimate fear that consumers will not analyze the data with care. A rapid response to a small number of cases that prevents the infection from spreading might be a sign that the business is acting responsibly to protect its residents. Making consumers understand that a facility has responded effectively to the pandemic poses a challenge to businesses.

On the other hand, transparency is essential to informed decision-making. Public disclosure that cases are clustering in facilities within a specific zip code allows the public to pressure health authorities to channel resources to places where they are most needed. Researchers found that public disclosure of the places where people tested positive for COVID-19 helped South Korea shape a productive response to the pandemic.

Transparency also helps the public understand whether state agencies are responding effectively to COVID-19 outbreaks in care facilities. The absence of data to track cases has hampered regulatory oversight in states that do not collect and disclose data about COVID-19 in private businesses.

Finally, transparency allows elderly patients to evaluate risks associated with long-term care facilities. Those risks might be unavoidable in even the best managed businesses, but patients and their families have a need to understand how well infections are being contained within facilities that they are paying for care.


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