Giving COVID-19 information while protecting privacy 'a tricky balance'

It's been a common refrain from the Nova Scotia government since the start of the COVID-19 pandemic they can't give more information about cases or outbreaks due to privacy reasons.

As health officials grapple with how to relay important information about an unprecedented global health crisis while protecting the identities of the people who have been infected, a privacy lawyer says there's a lot to consider.

"It's a tricky balance to strike," said David Fraser of Halifax firm McInnes Cooper.

"Obviously, there's a strong public interest in providing useful, reasonable information about the state of the pandemic and the risk that people experience."

But determining what exactly counts as useful, reasonable information can be challenging, especially when a person's privacy is on the line.

Fraser said most public sector privacy laws do allow the head of a government institution or public body to disclose private information if it's in the public interest, but it is their choice whether to provide such information.

Stigma of COVID-19

The more detailed information given about a case of COVID-19 such as age, gender, or occupation the greater the chance someone has of being identified.

"Looking at it from the outside in, I would expect that they're probably significantly informed by what has developed into a stigmatization of COVID infection," said Fraser.

He pointed to a situation that unfolded in northern New Brunswick in the spring, when the province's premier, Blaine Higgs, suggested an "irresponsible" medical professional who didn't self-isolate following a personal trip to Quebec was to blame for an outbreak of COVID-19 that resulted in more than 40 cases and two deaths.

While Higgs did not name the medical professional, the public had enough information to quickly identify him as Dr. Jean Robert Ngola, who said he faced death threats and racism from the community as a result.

An investigation by CBC's The Fifth Estate and Radio-Canada found that new contact tracing information casts doubt on the likelihood of Ngola being "patient zero" in the outbreak. Ngola recently pleaded not guilty to failing to self-isolate.

It's situations like these that illustrate the harm of identifying a patient and may give the government some pause on relaying more detailed information about COVID-19 cases.

"I think that weighs pretty heavily in their minds," said Fraser.

In an email, Health and Wellness spokesperson Marla McInnis said the province only shares details publicly if there is a need to do so.

"There are examples of people being identified, stigmatized and harassed online for contracting COVID-19. We do not want to put someone in that situation by providing more information than we need to publicly," she said.

McInnis also said the province seeks to provide Nova Scotians with the information they need to protect themselves without providing detailed and private information on specific cases.

"Public Health stays well connected to the evolving international evidence of transmission of the COVID-19 virus and uses this to inform our decisions and public messaging," the email said. "We believe that this is the most important information for Nova Scotians to help them understand and follow COVID-19 protocols."

Privacy 'the most overused excuse' for lack of transparency

Finding the balance between information and privacy in Nova Scotia could be made more complicated by the fact that case numbers have been relatively low in the province, so it would be easier for specific cases to be identified when there aren't hundreds of other cases blending in.

"Nova Scotia is not only kind of small in terms of numbers, but also small in other senses as well that people know people, and people talk, and people gossip," said Fraser.

"Even if you were to provide some information there are people within the community who would be able to pull those data points together with other information that they have.

"So it's a tricky spot to be in, and it's very easy to stand on the sidelines and be critical."

Fraser said that despite this, privacy is "the most overused excuse for lack of government transparency since the history of access to information laws."

"Do I think [the province] could provide more information than they have been? Yeah, yeah I do," he said.

"Privacy is the go-to reason to deny access to information, even if it's in the public interest, even if it's relevant to something that's a public story."

How data can help calibrate risks

Fraser said he would like to see more information about the epidemiology and what the known cases are actually telling health officials about the spread of the virus.

"I don't want to know who, I don't want to know where, and I don't want to know when, but I do want to know the how," he said.

"Are all of them associated only with places where people hang out for 15-plus minutes? Or are they seeing transmission from kind of less intensive contacts? Are they seeing it from surface spread? Are people in retail shownto be at risk, people visiting retail or people working retail?"

For example, in London, Ont., the Middlesex-London Health Unit released a graphic of how an outbreak started among Western University students and spread to others in the community.

It showed that 11 of the people who would later test positive sat together at a bar. Two of them shared a drink and two others shared an e-cigarette.

Fraser said having this kind of information about how COVID-19 is transmitted could help people calibrate their risks and behaviours in their day-to-day lives.

"And I think they could provide that sort of information as long as it's globally, over the course of the last seven months, rather than dealing with a specific outbreak," he said.

In response to that suggestion, McInnis's email said the public exposure notices released by the province can highlight the spread of COVID-19 in bars and restaurants.

"Again, we do not want to stigmatize businesses so information about locations is only provided publicly when it could help identify those who may have come into contact with the virus," she said.

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