Public health does not track health of recovered COVID-19 patients

More than seven months after she officially recovered from COVID-19, Blondine Arseneau says she's still living with the effects of the virus.

"I'm still tired," saidthe Moncton resident. "I'm better day by day, but I'm not like I was before. I don't have the energy that I used to have."

One day last week, after she did routine housework, she found herself too tired to go for her daily walk.

It's not an uncommon phenomenon. Some studies show up to 40 per cent of people who recover from COVID-19 experience long-term effects.

But other than a call from Public Health in May to check on how she was doing, and regular contact with her doctor for ongoing primary care, Arseneau says no one has been in touch with her to collect and measure information on her ongoing symptoms.

• When is someone considered 'recovered' from COVID-19?

"It could be an interesting study, to know why it happens to one person and not another," she said.

The Department of Health saidit has no data on how many of the more than 300 recovered patients are still dealing with health issues. Health Minister Dorothy Shephard says that's because they're no longer contagious and don't pose a risk.

Regional health authorities aren't collecting data either

The two regional health authorities saidthey are not tracking them either.

"Horizon does not have data on-hand as it relates to tracking the long-term health outcomes of patients who have recovered from COVID-19," the health authority's vice-president for medical affairs Dr. Edouard Hendriks said in a statement.

Dr. France Desrosiers, the vice-president of medical services at the Vitalit health network, saidin a statement it "does not keep track of long-term health outcomes of patients who have recovered from COVID-19."

Epidemiologist Raywat Deonandan of the University of Ottawa saidprovince-wide comprehensive data would be helpful.

• Life after COVID: How patients and researchers are learning what 'recovered' means

"We always want information," he says "These are the kinds of datasets we always advocate for."

CBC News first asked the Department of Health for data on recovered COVID-19 patients in June.

It took a request under the Right to Information and Protection of Privacy Act in October for the department to finally state that it doesn't have such data and doesn't track ongoing symptoms in recovered patients.

The two health authorities say family doctors or other primary care providers are responsible for follow-up with people who have recovered from COVID-19.

Public health puts more focuson tracing and containing

Deonandan saidthat makes sense because robust data on such effects are not the domain of Public Health. Its role is tracing and containing the spread of the disease, a task that's distinct from measuring impacts in recovered patients.

And tracking those who have recovered isn't the priority, he adds.

"I'm not surprised that this is not considered to be the mandate of most governments at the moment when their priority is simply stopping the epidemic."

He's not aware of any other provinces collecting it either.

As of Monday morning, 339New Brunswickers had recovered from COVID-19, according to Public Health.

Deonandan says data from Italy shows up to 40 per cent of COVID-19 patients can be "long-haulers," experiencing symptoms long past the initial two or three weeks after infection.

British researchers have described 10 to 25 per cent of patients with effects three months after recovery, with pulmonary fibrosis, or lung scarring, being among the most serious.

Other long-term symptoms have included issues with concentration and memory, shortness of breath and changes to their heart rate or blood pressure, muscle and joint aches and digestive problems.

Understanding who's most likely to get COVID-19

Deonandan says data on long-term effects could allow researchers to analyze what demographic categories of people are most likely to get them.

"Maybe you need additional precautions if you fall into these categories, because maybe you think you're a low risk but you're not a low risk. It helps us better define what a risk is," he says.

Hendriks says in his statement that Horizon researchers are "preparing to embark on studies" of the impacts of the pandemic but "at this time, none of these are directly related to examining long-term symptoms."

You can learn a lot from a sample of 300 people.You've got to begin somewhere and it's certainly useful.- Raywat Deonandan, epidemiologist

At Vitalit, COVID-19 patients are put in a registry for the monthly collection of data "for future analysis and research purposes," Desrosiers said.

Spokesperson Thomas Lizotte said that data "could help us understand the prevalence of long-term impacts on physical and mental health in these patients."

Deonandan says it's a lot of work to set up better data infrastructure to collect such information in a fast-moving pandemic.

Ontario's system for tracking pregnancy outcomes involved "a lot of effort for that simple but important thing to be realized," he says. "It would be nice to have it [for COVID-19] but I'm not surprised we don't have it."

While data on 300 recoveries in New Brunswick would not be statistically significant globally or even nationally, Deonandan says if they were representative of the country as a whole, they'd work as a pilot project for measuring long-term impacts of COVID-19.

"You can learn a lot from a sample of 300 people," he says. "You've got to begin somewhere and it's certainly useful."