When Sharing COVID-19 Case Counts, Public Health Officials Say They’re Careful Not To Share Too Much

May 28, 2020

In early March, Durango resident Miriam Gillow-Wiles attended a business meeting with people from around southwest Colorado. She's the director of the Southwest Council of Governments, which works with local officials from throughout the state.

But sometime after the meeting, she learned from her local health department that another person there had tested positive for COVID-19. 

Later, she started experiencing symptoms that developed into chest tightness, chills, shortness of breath, and what she described as “soul-crushing” fatigue. Gillow-Wiles came forward with her experience in a short video produced by the Montezuma County Public Health Department.

“I mean, to take the dog out for a walk, and let it back in … I needed a nap,” she said.

When this video was uploaded on Facebook at the beginning of May, it attracted responses from people throughout the community. Local publications, government offices, and individuals shared it, and The Journal wrote an account of her experience.

But her story has been one of only a small number that has been shared in southwest Colorado, especially in Montezuma County. Though the Four Corners Free Press mentioned in its May issue a Pleasant View man who died from the virus, and The Journal has reported on the controversy surrounding a man who tested positive for COVID-19 but later was found to have died of alcohol poisoning, few other details about those infected in Montezuma County have been made public.

So why do we have so little information, including demographics like ages, genders, or town residences of the cases?

KSJD asked Karen Dickson, public health emergency manager at the MCPHD, and she said people have asked her numerous times.

“We are in a fairly small community, and when we have just a few cases, although those cases are climbing, it’s still fairly easy to be able to somehow determine who those people might be,” she said. “The biggest promise that we have made to the cases as we’re doing contact tracing, is to protect their identity.”

She gave a concrete example of this need for privacy.

“We may have somebody in the county who [is] a business owner, who suddenly is no longer at their business,” she explained.

"If we had demographics, maybe you could put two and two together, and say, 'oh, well this person is no longer at their business, so maybe this business owner, maybe that was the one [who tested positive],'" she said. "And of course, then the rumors start, and what’s going to happen to that business? Are they going to be ostracized because they are COVID positive?”"

According to Gillow-Wiles, an official at the MCPHD approached her directly, offering to help her share her story. But they did that because their organizations had worked together in the past. There was no pressure for her to come forward, she said. Dickson said that otherwise, privacy concerns come first.

“[It] is far, far more important for public health to uphold that promise,” she said. “If those people would like to tell the world that they are a COVID-positive case, that’s definitely up to them, but that information is not going to be coming from public health.”

She says the county health department does share demographic data with the Colorado Department of Public Health and Environment. That goes into the anonymous database used to track cases across the state. They also use information gathered from those who test positive for the virus to help with contact tracing, which is also a private process. Any personally identifying information of patients is protected under federal law.

“Now, if we do have an instance where we start getting much higher cases - it’s not something we want, but it’s something we do note may be happening in the future - and the cases start being a little more diluted … then we may include a little more information,” she said. “But right now, the cases in Montezuma County are really trending about the same as the state cases are.”

Montezuma County has also begun including the number of negative tests and recovered COVID-19 cases in its data.

KSJD interviewed Gillow-Wiles over Zoom earlier in May, and asked her how she viewed the decision to keep case demographic data private.

“I understand why some people want more information about who’s been sick, and where they’ve gone,” she said. “I’ve read the comments in the papers, and seen it online, and things like that. So I really understand that crave for information locally, because it does feel a little sparse.”

But she also said she understood the need for privacy.

“We’ve got to be able to allow individuals to decide that for themselves, versus publicizing more detail about them,” she said.

When asked how she felt when she agreed to speak publicly, she laughed and said she wondered what she had gotten into.

“But it was a yes,” she continued. “It was a hard yes, initially, because I want people to know. It shouldn’t be a secret. People shouldn’t be pariahs, or vectors ... because [the virus] is pretty common,” she said. “I absolutely wanted to share my story, so people know what it was, and because it can help to alleviate some of the fear of the unknown.”