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Dr. Madhu Jawanda, a family physician in Surrey who has been doing COVID-19 outreach in her community, at David Lam Park in Vancouver.Jackie Dives/The Globe and Mail

For much of the pandemic, Dr. Madhu Jawanda struggled to get a clear picture of how the virus was spreading in racialized communities in B.C.’s Lower Mainland.

The province’s health authority was refusing to release race-based data on COVID-19 cases, citing fears that the information would stigmatize neighbourhoods that had high infection rates. So Dr. Jawanda and other members of the South Asian COVID Task Force, a group she co-founded that supports COVID-19 prevention and education in South Asian communities, began gathering their own.

“We didn’t have a choice. We were like, ‘Okay, how can we figure this out?’ ” she said.

The task force compared ethnic data from the 2016 census with information about outbreaks across the Lower Mainland to deduce how they were impacting South Asians and other racialized populations. They reached out to community leaders for help understanding the situation on the ground. From there, they developed videos, infographics and virtual town halls in languages such as Hindi and Punjabi.

And then, in May, they received some assistance from an unexpected source. The Vancouver Sun obtained leaked reports containing neighbourhood-level data on COVID-19 case counts and vaccination rates from the BC Centre for Disease Control (BCCDC). The leaked information confirmed much of the work that Dr. Jawanda and her fellow task force members had already done themselves. COVID-19 cases, they now knew beyond a doubt, were clustered in neighbourhoods with racialized populations.

After more than a year of calls from public-health experts and journalists for B.C. health officials to release neighbourhood-level information about infection and vaccination rates in the province, the BCCDC data leak made plain the way COVID-19 was disproportionately affecting lower-income communities of colour. In the months since, the leak has prompted a new conversation among public-health officials and advocates about whether keeping such data under wraps was ever a good idea.

Now, experts and advocates say that further transparency, through race-based data collection, could prove crucial in combatting current and future public-health emergencies.

Despite concerns about stigmatizing racialized communities, community groups and public health officials say B.C.’s data leak has proved to be a positive development. They say having official data to back up their efforts has helped them overcome skepticism among members of the public.

“I think this is a watershed moment for Canada in terms of transparency not being harmful, but actually being helpful,” said David Fisman, an infectious disease specialist and member of Ontario’s COVID-19 Science Advisory Table.

After the May leak, the B.C. government began releasing some neighbourhood-level data regularly. Dr. Jawanda found herself wishing that her team could have had access to this information when they first began their education efforts.

If they had, she said, the task force would have been able to mobilize more quickly and with more precision to address the dire toll of the second wave – and potentially save lives in the process. Instead, it them took months of work to understand the severity of the pandemic’s impact on South Asian communities and bring crucial COVID-19 prevention and vaccination information to those most at risk.

Dr. Jawanda said it wasn’t that surprising to her when Surrey, which is home to many racialized and low-income people, proved to be the hardest-hit city in B.C., according to the leaked reports. The city represented 10 per cent of the provincial population, but 29 per cent of COVID-19 cases.

Racialized people tend to be overrepresented in frontline industries, live in multigenerational homes and face language barriers and other hurdles in accessing health information, Dr. Jawanda said, all of which may make them especially susceptible to infection.

The BCCDC declined to comment for this story.

Dr. Sarah Otto of the B.C. COVID-19 Modelling Group, an interdisciplinary team of academics who have been examining the province’s pandemic data, said she was aware that the Fraser Health Authority had been the hardest hit by the virus. “But where and exactly which communities, we didn’t know,” she said. The modelling group had only been able to access data publicly released by the province. “To find those areas that were behind in vaccinations or that were really hard hit by cases, you need really local data.”

Since May’s data leak, Dr. Otto said, she has seen efforts from local religious and community leaders to support continuing vaccination campaigns, and to make COVID-19 and vaccine information accessible in many languages.

Dr. Jawanda and her colleagues used the data to better target the task force’s many education initiatives. They posted videos on their social-media feeds of locals sharing stories in Punjabi about how the pandemic has devastated their families and why they decided to get vaccinated. The task force also launched This Is Our Shot, a campaign to reduce vaccine hesitancy that advertises in mainstream and ethnic media and has a website accessible in nearly 40 different languages.

“Any opportunity we could get to educate the community in a culturally relevant way and in languages they could understand, we did,” Dr. Jawanda said.

Other regions of Canada have been similarly reluctant to share race-related data. Dr. Tyler Williamson, associate director of the University of Calgary’s Centre for Health Informatics, said researchers haven’t been able to study how the virus has impacted racialized communities in Alberta because the province doesn’t release any race-based or neighbourhood-level data on COVID-19 cases.

By contrast, Toronto started releasing neighbourhood-level data early on in the pandemic, which advocates say allowed their groups to better respond to outbreaks.

“Without the data, you really can’t remedy the problem as efficiently or as effectively as we started to do in Toronto,” said Janelle Brady, senior co-ordinator for the University of Toronto’s Centre for Integrative Anti-Racism Studies.

In Toronto, neighbourhood-level data revealed that 22 per cent of residents of the wealthy Rosedale area had received at least one vaccine dose as of April. But in Jane and Finch, a racially diverse, low-income neighbourhood where hospitalization and death rates were eight times higher than they were in and around Rosedale, only 5.5 per cent of people had received the vaccine.

Armed with these data, advocates and community health centres pushed for more vaccination clinics closer to where the hardest-hit communities live and work, including Jane and Finch.

“We started to see a shift locally on the ground as soon as that [report] was released,” Ms. Brady said. “A lot of community organizations then responded by saying, ‘It’s not vaccine hesitancy, it’s vaccine equity.’”

Throughout the pandemic, Ms. Brady said, she has seen members of the Jane and Finch community tirelessly come out to support and advocate for one another. In addition to leading the push for vaccinations, community organizers have delivered masks and food to those in need within neighbourhoods identified as high-risk. Peel Region, a suburban area with a large racialized population that was initially overwhelmed with outbreaks and plagued by a lack of vaccine equity, has now administered more than two million vaccine doses as a result of grassroots efforts that were informed by publicly available data.

In B.C., there are still calls for more data accessibility – particularly around variants of concern.

“We are not world leaders in open data and certainly not in open health data,” Dr. Otto said. “There is still basically no information linking things like the variants to health outcomes or vaccination status of people.”

Dr. Fisman said that Canada’s reluctance to break down public-health data by race is preventing researchers from gaining a wider understanding of the experiences people of colour face during public-health crises.

“We’ve told ourselves that we didn’t have the issues that people have in the U.S. around race,” Dr. Fisman said. “Suddenly when you start seeing places like Toronto Public Health release these data by neighborhood, you realize we absolutely do have those same issues.”

Like many Canadian officials, he was concerned about the potentially stigmatizing effects of collecting race-based data. But, after discussions with his colleagues of colour, Dr. Fisman said he has come to see these data as crucial for identifying and eliminating systemic racism and inequalities in public health. Without data to identify these problems, he said, Canada can’t begin to fix them.

Asking people to follow pandemic restrictions without allowing them access to the data on which the government is basing the restrictions, he said, is a “very paternalistic” and outdated practice.

Dr. Fisman said race-based information has heavily informed the recommendations he has made in his role on the Ontario Science Table. The BCCDC’s release of detailed COVID-19 data following the information leak has given him hope for a more transparent and equitable future, he added.

“I think the data allows us to have an honest conversation about it and identify the problem to start to try to fix it,” he said. “You can’t solve a problem if you can’t articulate it.”

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