NC and Triangle counties aren’t releasing coronavirus test details. Why that matters.
North Carolina and Triangle county health officials are not providing as much information about coronavirus patients as other states and even in other parts of North Carolina.
After mounting public pressure, Mecklenburg County released demographic information on Sunday that showed nearly 50% of cases were in people under the age of 40, The Charlotte Observer reported.
Open-government experts told The Charlotte Observer that the county was “withholding more information than legally necessary, potentially missing opportunities to raise public awareness of the coronavirus.”
The News & Observer requested similar demographic information — age or age range, gender, race and zip code — of COVID-19 patients across North Carolina and, specifically, in Wake, Durham, Orange, Chatham and Johnston counties.
So far, North Carolina and Wake County have said they are working to provide the data, but after multiple requests the data had not been released by 5 p.m. Tuesday.
“Wake County is committed to openness and transparency,” said Dara Demi, Wake County communications director. “However, before we share the information you requested, we need to analyze the data, which is coming in from multiple sources, to make sure it’s as accurate and informative as possible.”
The other local counties claim it violates patient privacy laws, like the Health Insurance Portability and Accountability Act (HIPAA) or their own policies.
“HIPAA protects personally identifiable healthcare information, but it does not in any way prevent the disclosure of aggregated data and does not prohibit the disclosure of aggregated data descriptives,” said Amanda Martin, attorney for the N.C. Press Association. “More granular information like a zip code or race would not be considered personal health care information unless or until they can describe for me a community that is so small that identifying someone as Asian or Latina or white or black, in and of itself, becomes an identifier.”
Proponents say releasing data points like these can broaden understanding of the virus and give them information that might help them know whether they fit the profile of someone who is at high-risk of becoming sick with the disease.
But John Wallace, an epidemiologist with the N.C. Institute for Public Health, said the numbers don’t necessarily give the full story.
“These demographics reflect known cases at this time, and they shouldn’t be used to determine who is at risk and where,” Wallace said.
He said the data does not give insight to where the infected individuals may have gone, how the individual became infected and who is at risk of getting it. He added that there has so far been little community spread.
Wallace said the public needs to be careful to not stigmatize or parse out who might have the virus. He said it makes less sense for smaller counties to report the data because it’s easier to violate patient privacy laws.
“People are naturally going to want to do that when there is a time of uncertainty and a little bit of fear and worry,” Wallace said.
Wallace said the state is collecting the information to do contact tracing to find close contacts and reach out to them to warn them they may have come into contact with the disease.
Wallace said the numbers are being put out publicly in some places for no other reason than people want to know.
The first case reported in Wake County and the state was about three weeks ago. The number of confirmed cases has swelled to over 60 in Wake County and more than 70 in Durham County. There were more than 450 confirmed cases across the state as of Monday afternoon.
These numbers only reflect officially confirmed cases. Testing is limited and there are likely more unreported cases.
How NC is responding
During a news conference Tuesday, N.C. Department of Health and Human Service Chief Medical Officer Elizabeth Tilson said her staff is culminating the curves and trends in the data to be more transparent with residents and plans to release that information soon.
She added that she needs to find a balance between releasing data needed to protect public health and data that could easily identify a patient.
Tilson said releasing information on a county level risks a person’s privacy more than releasing information on a broad level.
Other states across the country have been sharing far more detailed data publicly. Florida health officials release a daily report with extensive data demographic data on all reported cases.
Public health officials need to be “mindful of sharing information that is critical to achieving an effective public health response,” said Brooks Fuller, N.C. Open Government Coalition.
“Public officials are rightly concerned about sharing any information that might be considered personally identifiable information,” he said. “At the end of the day, information related to the government’s response to the current public health crisis is squarely in the public interest. There has certainly been a lot of inconsistency in the responses from across the state.”
How other counties are responding
Representatives in Durham, Chatham, Orange and Johnston counties all declined to provide the requested information.
“It is not in the best interest of our citizens affected by COVID-19 to release this information,” said Melanie Proctor, Johnston County spokesperson.
Orange County spokesperson Kristin Prelipp referred questions to the NC Department of Health and Human Services, and said it was not the county’s policy to release the demographics.
“Demographic information may be sufficient to make the information individually identifiable, even without the name,” she said. “Therefore, the information must be managed in a way that complies with these laws.”
Putting out location information will likely increase calls from “worried well” people who only “tax already burdened health department and medical staff,” said Kara Dudley, spokesperson for Chatham County.
“Mapping only confirmed cases may lead residents to misinterpret risk and not follow guidance on social distancing that is so critical to slowing the spread of COVID-19,” she said.
This story was originally published March 24, 2020 at 5:18 PM.
