As North Carolina health officials battle the outbreak of the Coronavirus across the state, the state has tightly controlled access to information related to the pandemic, providing some data but refusing to share others, even when requested.
The North Carolina Department of Health and Human Services updates a dashboard of information related to the virus each morning, including the number of laboratory-confirmed positive cases, the number of people tested for the virus and the number of people who have been hospitalized and who have died.
More recently, NCDHHS added a breakdown of additional data to its dashboard. For instance, you can look at a breakdown of the number of confirmed cases across the state by race or ethnicity. But that breakdown doesn’t tell you how many people from each group have been tested overall.
It gives similar breakdowns on age ranges and gender. It is relying on hospitals to report the number of hospital beds, ICU beds and ventilators available and in use. The reporting has been up and down, particularly from small hospitals, DHHS Secretary Mandy Cohen acknowledged earlier this week.
Many states provide a similar "data dashboard" to the one used in North Carolina, which DHHS updates once a day by about 11 a.m.
"We believe that is important information for the people,” South Carolina Gov. Henry McMaster said at a press conference last week. “We want the people to know what we are facing."
South Carolina state epidemiologist Linda Bell said state health officials use zip code data for monitoring or contact tracing. She cautioned, however, that the public should not use the zip code data as a sign that they can disregard measures put in place by the government.
"If they rely on that information to make decisions about which neighborhood is safe or not, they're making a mistake," she said.
Louisiana, which has been hit particularly hard by the coronavirus, provides much of the same data as North Carolina. The state, though, gives the number of patients with COVID-19 on ventilators and it makes public the underlying health conditions for those who have died.
Virginia makes publicly available very similar information as North Carolina.
While North Carolina has started providing a statewide total of outbreaks — that means two or more positive tests — at congregate living facilities, the state and counties have not named the nursing homes or residential care facilities where the outbreaks have occurred.
News organizations in North Carolina that have asked for this information have received no response and no indication whether that information will be made available. However, some county health departments have shared this information about facilities in their counties.
Despite the gaps in the state’s reporting, it’s still ahead of plenty of others. The COVID Tracking Project, a collaborative dataset hand-gathered and maintained by a volunteer team of coders, journalists and analysts, gives North Carolina’s COVID-19 data an “A” for consistently reporting positive and negative tests in both commercial and public labs.
Collaborative request for information has gone unfulfilled
In an effort to get a more granular understanding of the cases of COVID-19 across North Carolina, a collaborative of six newsrooms across the state submitted a records request seeking the state’s database of reported cases and other records on March 20.
The request specifically asked for patients’ names to be redacted, as required by federal health privacy law.
Despite that, State Health Director Dr. Elizabeth Tilson said most of the records being sought by the collaborative were not public.
“Most of the records and information you requested, however, contain confidential medical information from patient records that are protected by law as strictly confidential under G.S. 130A-143, with some very limited exceptions,” Tilson said in a letter responding to the request on April 1.
Adam Marshall, an attorney with the Reporters Committee for Freedom of the Press who has been tracking records and access issues across the country during the COVID-19 pandemic, said many state and local governments have cited the federal health care privacy law — known as HIPAA — to withhold documents, but it doesn’t apply.
“Public officials just throwing HIPAA around like it’s a magic wand are not correct,” Marshall said.
Similarly, Raleigh attorney Amanda Martin, with the law firm Stevens, Martin, Vaughn and Tadych, addressed the issue in an email she sent reporters earlier this week as part of a regular series of updates on the state’s open government laws.
“Remember that release of de-identified information or aggregated data does not violate either HIPAA or state law,” Martin said in her email before pointing to a specific state court opinion that found if federal law allows disclosure of certain information, state law requires it.
In her letter responding to the collaborative’s public records request, Tilson also said releasing most of the records sought would deter people from seeking treatment and providing health information in the future.
“While the public records act does not require and, with limited exception, the law does not allow public disclosure of personal health information collected by health officials, I think it’s important to understand there are public health and safety considerations informing what data and records state and local health officials collect and share,” Tilson said in her letter.
“In order to learn more about a communicable disease, for example who is at higher risk of complications of an infection and how it spreads, public health officials may need access to a variety of highly personal information related to a person’s medical history, health status, where they‘ve been, what they’ve been doing, and with whom they’ve come into contact,” the letter continued.
But Marshall, the RCFP lawyer, said the more data a government releases, the more the public can understand its response to the ongoing health emergency.
“The more data that is released, the better the public is informed and the better the governments are able to figure out what needs to be done,” he said.
Tilson’s response said the agency would release some information but, as of Thursday afternoon, no information had been provided.
A NCDHHS spokeswoman has previously said the agency would produce records in a “reasonable time.”
Another agency cites ongoing emergency to delay request
This week, the collaborative also requested records from the North Carolina Office of Emergency Management.
Specifically, the request sought to get records that would show needed resources in communities across the state.
On Thursday, an employee for the North Carolina Department of Public Safety — the agency under which OEM is housed — responded and said any production of records in response to the request would likely be delayed.
“Your request is extensive and we will respond as promptly as possible,” Susan Smith, with NCDPS, said. “While we fully appreciate and support cooperation and transparency, please be aware that the fulfillment of your request may be delayed due to the unprecedented workload associated with ensuring the health, safety and security of staff members and the public during this time of pandemic.”
Smith’s title at NCDPS is public records lead, indicating her role within the organization is to fulfill public records requests.
Marshall, the RCFP lawyer, said the pandemic is no reason for government agencies to delay or deny a request.
“I think it makes sense for everyone to be a little bit flexible and try to do the best under the circumstances but it’s not acceptable for governments to simply say, ‘We’re not going to give you anything, maybe come talk to us when this is all over,’ because there are things happening now that the public needs to know about,” he said.
This story was jointly reported and edited by Kate Martin and Frank Taylor, of Carolina Public Press; Gavin Off, Ames Alexander and Doug Miller, of The Charlotte Observer; Brian Murphy and Jordan Schrader, of the Raleigh News & Observer; Nick Ochsner, of WBTV; Emily Featherston, of WECT; and Tyler Dukes and Ashley Talley, of WRAL.