How much should the public know about COVID-19 cases? It depends who you ask

New Brunswickers know how many cases of COVID-19 have been reported in their province, but not how many are linked to community transmission.

They don't know how many are male or female — a detail the province stopped releasing last week, following a complaint — or the age of the patient who has been hospitalized.

Nor did the public know that a Prince Edward Island resident who later tested positive for COVID-19 passed through the Greater Moncton Roméo LeBlanc International Airport on March 20 after returning from the Dominican Republic on a Sunwing flight, until the Greater Moncton Airport Authority publicized the information — not public health.

Horizon Health Network has also declined to say how many of its staff members have tested positive for COVID-19, describing it as "personal health information."

It raises a question: During the public health emergency over COVID-19, how much should the public know about the cases in their community?

The decision on how much information to release to the public is up to chief medical officer of health Dr. Jennifer Russell, Premier Blaine Higgs suggested on Friday.

"It's certainly within her purview to decide what is appropriate to share for details and what's not," Higgs said, after being asked why the public wasn't allowed to know more about New Brunswick's COVID-19 cases.

But during a public health crisis, sharing "thorough and comprehensive information to the public" is more important than ever, according to Michael Karanicolas, president of the Right to Know Coalition of Nova Scotia.

"This is not something that can just be shunted to the back burner," Karanicolas said.

"Even though there is a crisis on, a lack of information is a part of that crisis, and keeping the public informed is a core duty of government now more than ever."

Less public information

As the number of cases in the province rises, the flow of information about specific cases has slowed to a trickle. In some cases, it changes day by day. On Sunday, when 15 new cases were reported, public health didn't provide age ranges for those patients, but the detail returned in the Monday briefing.

At the same time, New Brunswick's access to information system has been slowed down significantly, as the provincial government focuses on essential services. Ombud Charles Murray approved extensions for public bodies, giving them until the end of May to complete active access to information requests.

It's also been difficult to ask questions of other ministers in government: When Information Morning Fredericton tried to interview Education and Early Childhood Development Minister Dominic Cardy last week, it was told Russell and Higgs are now "the main spokespeople" for the government.

The only opportunity to ask questions of Russell and Higgs comes during the daily news conference, but no news conference was held on Saturday or Sunday.

Last week, reporters were told to limit their questions to only one per outlet so question-and-answer sessions could wrap up in 20 minutes, though the rule hasn't been enforced yet and outlets were allowed two questions on Friday and Monday.

That's problematic for Karanicolas, who sees the media as the main intermediary for getting information from government to the public.

"It's very important that governments continue to take this responsibility of transparency and openness very seriously in order to ensure that the public has confidence in their government's response, especially in a time of crisis," said Karanicolas, who is also a researcher with the Yale Information Society Project.

Differing standards across the country

But how much should they share? Each province seems to be answering that question differently.

While New Brunswick has stopped revealing the gender of patients, British Columbia breaks down its COVID-19 infections by gender, hospitalizations by age and date of onset of symptoms, though the province has significantly more reported infections than New Brunswick.

Data is reported inconsistently across the border, too. In Maine, people can go online to see a breakdown of cases by county, age range and gender.

But in Florida, the public can browse a dashboard with testing details by county, including the number of tests conducted in each county and the number of non-residents who tested positive.

Murray, who is responsible for the protection of privacy and access to information, sees it from two competing sides.

On one hand, people "want the best information possible," so they can understand what's going on.

But on the other is the responsibility to protect the identity of people who have tested positive for COVID-19, he said.

"When you have a small number of cases, one of the good problems you have from your luck in having a small number of cases is that you can't drill down that far in the data without a higher risk of identification," Murray said.

He said people "often severely underestimate" how easy it is to piece together someone's identity with "small pieces of information."

At the same time, he said government needs to be clear and transparent now with the public more than ever.

"We're turning to the citizens of this province and we're saying to them, 'We're all in this together, we need a collective response to try to contain this outbreak and to protect the most vulnerable people in society," Murray said.

"That is a time for government to show the citizens its cards and not to be secretive or to be protective of what's actually in its mind and what it's actually trying to do."

Murray wouldn't confirm or deny whether his office has received privacy complaints from COVID-19 patients.

"What I can say is that government has had patients in the system ask them to guard their information more, and government has decided to do that."

Epidemiologist says location is key

Colin Furness didn't hesitate when asked how much the public should know.

"There's no doubt in my mind, the public should be getting more information about where cases are," Furness, an infection control epidemiologist and assistant professor with the University of Toronto, told Information Morning Fredericton on Tuesday.

"By using the first three digits of the postal code, which don't identify a very, very tight area, but a tight enough area that people can get a sense of, 'Wow, there's a case in my neighbourhood, I should be more concerned.'"

For Furness, it's not about the public's right to know, but more about getting people to be more vigilant.

He doesn't buy the reasoning that someone might be able to figure out someone's identity from the first three digits of their postal code.

"Public health and privacy are not always going to be aligned," Furness added.

"When we think about what's important in the public interest, if we had to choose one or the other, I would choose public safety over privacy."

Furness suggested that location is the most important piece of data for the public to have. Demographic data, such as gender, is less important, he said, and could actually make it easier to identify people.

How will government use your information?

At the same time as government has limited the flow of information going out, it is asking the public to give it more information.

Last week, the government launched a COVID-19 information line that can also be used to report people who aren't following emergency declaration rules, including self-isolating if they're been required to do so. The premier warned on Monday that people breaking the rules could face fines.

The province has also set up checkpoints at its borders, where provincial officers are collecting information from passengers and using it to track them.

When asked how that information is being protected, Higgs said on Friday that it's "exclusively used for our officers" but didn't specify exactly how people are being tracked or how long their information will be kept.

"The information that we're collecting from our officials is information that we're using for our sole purpose of tracking and seeing that people are going to their homes if it's a self-isolating case," the premier said.