NDP calls for race-based data collection to combat racism, spur change

Valid call. Will see whether the government’s Centre for Gender, Diversity and Inclusion Statistics within Statistics Canada starts to generate results and in which areas:

NDP Leader Jagmeet Singh says the federal government must start collecting race-based data in order to make policy changes that will start to turn the tide on what the United Nations has called the “deplorable” treatment of African Canadians.

Protests against the police-killing of George Floyd in the U.S. spilled into Canada last weekend and Toronto was seized by the death of Regis Korchinski-Paquet, who fell from a 24th-floor Toronto apartment while police were in the home. Her death is under investigation by the province’s police watchdog.

On Monday, Canada’s political leaders tried to address the growing outrage. Mr. Singh proposed firm steps to address anti-black racism in Canada, while Prime Minister Justin Trudeau promised his government would do more but didn’t outline specific steps or a timeline to act. Conservative Leader Andrew Scheer proposed no new policies but said all levels of government have “much more to do.”

In contrast to protests south of the border, violence at Canadian demonstrations was limited to Montreal, where 11 people were arrested after dozens of businesses were damaged at the tail end of the formal march, which took place without incident.

Mr. Trudeau promised to “keep taking meaningful action to fight racism and discrimination in every form.” That progress in Canada has been too slow though, according to a 2017 United Nations Human Rights Council report on anti-black racism.

Across Canada, the report found disproportionately high unemployment rates for African Canadians, leading to more precarious and low-paid work, and worse health outcomes, where people in black communities are less likely to access health care services and more likely to suffer from chronic health conditions. In Nova Scotia, it found “deplorable” socioeconomic conditions and no change in educational inequities, 30 years after schools were integrated.

While federal leaders acknowledged the persistence of racism and systemic discrimination in Canada, Quebec Premier François Legault denied that it stems from structural problems.

“All humans are equal, are all the same, regardless of the colour of their skin,” Mr. Legault said. The UN report found African Canadians in Montreal have the highest poverty rates among visible minorities in the city.

The UN report recommended a mandatory nationwide policy on the collection of data disaggregated by race, colour, ethnic background, national origin and other identities “to determine if and where racial disparities exist for African Canadians so as to address them accordingly.”

That hasn’t yet happened and without it Canada is missing critical information that countries like the United States have readily available, said Arjumand Siddiqi, Canada Research Chair in population health equity. For example, Canada does not have information about how employment statistics break down along racial lines, making it difficult to know if some groups are being excluded from the suite of financial aid the Liberals have rolled out in the wake of the economic shutdown sparked by COVID-19.

While race-based data is collected in the census every five years, there is no routine collection of data, and on top of that, the data that is collected is not readily available, said Prof. Siddiqi, who is also an associate professor at the University of Toronto’s Dalla Lana School of Public Health.

The difference between the data available in the U.S. and Canada is “night and day,” she said. Without that data, evidence-based policy changes are stymied and it’s harder to hold governments to account.

The failure to collect the valuable data comes even as the impact of having the information is clear, Mr. Singh said, noting that changes to police carding were only made when numbers laid bare that the practice disproportionately targeted black and Indigenous people.

He said the data collection would help spur systemic changes in policing, the justice system and to inequities in health care, education, housing and employment, which “perpetuates the undervaluing of black life, of racialized people’s lives.”

The Liberals funded a new Centre for Gender, Diversity and Inclusion Statistics within Statistics Canada in 2018. A spokesperson for Innovation, Science and Industry Minister Navdeep Bains did not explain why a separate centre was created rather than integrating it with all of the work done by the federal agency.

Evidence from other countries and small pockets of information in Canada show that poorer people and people of colour are being hit harder by the novel coronavirus. But the Prime Minister acknowledged that collecting that information widely in Canada is an uphill battle, given that at the moment the government doesn’t even have the age data for a “large portion” of the people diagnosed with COVID-19.

Mr. Singh also said he supported the use of body cameras for police officers to ensure accountability and said police need more training in how to de-escalate incidents.

The UN report released a long list of recommendations to the federal government, which included apologizing for Canada’s history of slavery and other historical injustices, as well as considering paying reparations. The federal government on Monday did not say whether it was going to accept either of those recommendations.

Source:    NDP calls for race-based data collection to combat racism, spur change NDP Leader Jagmeet Singh echoed the call made in a 2017 UN Human Rights Council report on anti-black racism in Canada <img src=”https://www.theglobeandmail.com/resizer/06BMxG3XANkkpiQPUyh4FRZLZTY=/0x0:3600×2400/740×0/filters:quality(80)/cloudfront-us-east-1.images.arcpublishing.com/tgam/OV42UZ73E5JO7BMPP6YND6GQ3I.jpg” alt=””>     

Health agency reveals race-based data guideline as calls grow for nation-wide collection

Yes!

Will take some time given the coordination required to ensure consistent data across provinces, with Quebec unlikely to play ball unfortunately (CIHI data does not automatically include Quebec data. When I asked the Ministère de la Santé et des Services sociaux for the comparable birth tourism (non-resident) birth statistics, I was met by bureaucratic obfuscation and had to go to major hospitals directly):

In response to calls for better demographic data to understand health inequities and COVID-19, this week the Canadian Institute for Health Information is releasing an interim race data standard that public health agencies can use.

Many advocates, though, are pushing for more than advice, saying the federal government has a leadership role to play to ensure there’s consistent data, regardless of jurisdiction. That gap in information affects the provincial, territorial, and federal response to the pandemic and until the country moves forward with race-based and disaggregated income data, Canada “can’t possibly target resources” and care where they’re most needed, said Dr. Jennifer Rayner, an epidemiologist and director of research at the Alliance for Healthier Communities.

“It’s ignorance and blindness to where there’s gross inequities. Until we know where the discrepancies and inequities in health are, we can never tackle them,” she said, saying communities need action and the work needs to start somewhere. “I hate to keep waiting until we get it all perfect.”

The alliance is part of a national working table headed by Canadian Institute for Health Information (CIHI)—which the institute notes are not formal—that’s considering two things: what data to collect, and how to train health professionals so they’re comfortable asking these questions. While this work has been going on for years, the report on the interim standard noted a “heightened awareness and interest” in collecting such data to better understand COVID-19’s spread.

The lack of data on race in Canada makes it difficult to monitor racial health inequalities and CIHI’s interim standard was created in an effort to “harmonize and facilitate collection of high-quality data,” according to a copy shared with The Hill Times of the standard, “Race-Based Data Collection and Health Reporting,” to be released later this week.

It proposed two questions asking patients to identify their race categories (also giving the option of “prefer not to answer”) and whether they identify as First Nations, Inuit, or Métis.

Though the Public Health Agency of Canada (PHAC) has said it is looking into the possibility of collecting more demographic data related to COVID, most said it’s a matter of political will, under the direction of Health Minister Patty Hajdu (Thunder Bay-Superior North, Ont.) and Indigenous Services Minister Marc Miller (Ville-Marie–Le Sud-Ouest–Île-des-Soeurs, Que.).

When asked, neither of the ministers’ offices, the PHAC, or CIHI offered a position on whether such data should be collected nation wide.

However, Ms. Hajdu’s spokesperson, Cole Davidson, said in an email that “[d]emographic data collection and data sharing between the federal and provincial/territorial governments is crucial to advancing our knowledge of COVID-19 and understanding potential inequalities in our health care system. We’re working with provinces and territories to ensure we’re collecting the data we need to better understand this pandemic.”

And while these conversations are happening, advocates say it’s not leading to the outcome that is becoming more urgent by the day—a commitment and timeframe for nationwide data collection.

“As a national strategy, if you don’t value gathering the data it’s hard to motivate other places to do so,” said Aimée-Angélique Bouka, the College of Family Physicians of Canada vice-chair-elect for residents. “You’ll see disparity across the board if you don’t see proper federal leadership in the project.”

‘It’s all about political will’

Canada has a blind spot regarding its treatment of racialized groups and immigrants, despite the evidence, she said.

COVID-19 was thought to be “the grand equalizer,” but some populations have proved more vulnerable. In the United States, by mid-April nearly one-third of those who died were African American, an Associated Press report revealed, though Black people represent about 14 per cent of the population where they reported. Such disparities exist in Canada, though Dr. Bouka said society is uncomfortable with painful questions that reveal a pattern of neglect.

“COVID is only a snapshot and a clear representation of what happens in our country in a systematic way.”

She said she would add a question about immigrant status, and how long a person has been in Canada as other important markers that influence health, said Dr. Bouka, who wrote about that blind spot for Policy Optionsthis month.

Because we don’t have this self awareness we are slow to accept it, but once the outbreaks became evident, demographics became impossible to ignore, she said.

For more than two decades, Independent Senator Wanda Thomas Bernard has been calling for race-based data collection.

“It’s so frustrating and infuriating,” said Sen. Bernard (East Preston, N.S.), a former social worker and researcher who co-authored a 2010 book, Race and Well-Being, which she said demonstrated racism is an everyday experience for Black Canadians and has an impact on all forms of their health.

“I can’t help but ask myself, ‘How many more casualties do we have to see before there’s a true appreciation for why the collection of this data across all provinces and territories [is] essential?’”

Sen. Bernard said she has been asking these questions of Liberal ministers and their aides—she’s not comfortable divulging the details of these conversations—and while she remains hopeful, she said it’s “all the more urgent to make the decision now.”

“We need to be on the same page with this, and let’s cut through the politics,” she said, and look at COVID-19 as a starting point, an “awakening” for the inequities in health that long predated the pandemic.

Unfortunately, it takes more than proof to shift policy, said Dr. Bouka and it becomes about building more evidence and raising enough voices to make inaction impossible.

“It’s mostly us being reminded so politicians can’t ignore it. Ultimately, it’s all about political will. If your weaknesses are shown repeatedly, then you can’t just pretend that you didn’t know,” she said.

Though it’s left up to the individual jurisdictions, Sen. Bernard said it’s important to have data that’s consistent across the country, which requires leadership so that it is collected in the same way.

Alex Maheux, CIHI spokesman said by email it’s up to the provinces and territories to decide how to proceed, but it has expressed willingness to support jurisdictions in that data collection and is currently working with partners to understand race and ethnicity data needs.

Earlier this month, Manitoba became the first province to track the ethnicity of COVID-19 patients while Quebec and Ontario have said they will as well. At a local level, Toronto has also said it tracks demographics.

In mid-July, CIHI said it will also publish a broader discussion document, followed by ongoing engagement with relevant stakeholders to “refine” the standard, if needed.

Public Health Agency of Canada spokesperson Maryse Durette said by email the government is committed to working with the provinces and territories—as well as other partners—to improve data completeness and access, including demographic information.

“These indicators will help to further our understanding of COVID-19 among different population subgroups and to monitor trends going forward,” she said, and it plays “a critical role” in helping to understand disease severity and risk factors, to monitor trends over time, and to ensure that public health measures can be effectively designed and delivered where needed.”

Data collection on Indigenous people ‘distinct’

CIHI’s standard notes that though Indigenous groups are often considered alongside racial and ethnic categories, First Nations, Inuit, and Métis have “inherent and collective rights to self-determination,” including ownership and governance of their data. That warrants “distinct consideration” and must include engagement with Indigenous communities and data governance agreements.

Canada tracks on-reserve cases of the coronavirus, but with nearly half of First Nations living off-reserve, the picture is incomplete. Yellowhead Institute independently researched, and on May 12 published findings revealing more than triple the cases reported by Indigenous Services Canada. Mr. Miller has acknowledged the department’s data is insufficientand on May 9 announced $250,000 towards improving data collection—not enough, according to Yellowhead researcher Courtney Skye.

“If we’re going to recognize First Nations, Indigenous, and Inuit are more impacted and more at risk for poor outcomes because of COVID-19, there needs to be a multi-jurisdictional prioritization of getting proper information available to communities to make informed decisions,” she said.

“Communities have a right to that information and the federal government has a fiduciary responsibility to make sure this work is adequately funded.”

Rose LeMay, CEO of the Indigenous Reconciliation Group and regular Hill Timescolumnist, penned a plea in April for COVID-19 data that notes background and Indigeneity. A month later, she said she remains baffled there’s been limited movement to close the data gap.

“This is a once-in-a-lifetime data dump, if we were to access it, because this shows the inequities of the system”, she said, noting Canada has “substantial work” to build trust given its problematic history collecting information on Indigenous people, and declaring who is and isn’t status.

That could be addressed by involving organizations perceived as objective to lead the way alongside Indigenous groups, and would likely require building new partnerships to do it well.

The lack of trust shouldn’t stop this work from happening, she said, adding the “how” is a “purely technical exercise” that she said she thinks Canada’s health-care system is capable of managing.

Ms. Skye said the patchwork approach isn’t working and it needs to be led by Indigenous people and be properly resourced. She added that this is another indication that the Liberal government’s approach to reconciliation is more for “show” than addressing “tangible barriers,” like health, that impact the daily lives of Indigenous people.

“These realities are known, are well-documented, and have existed for a long time, and there hasn’t been enough of the practical work done on behalf of the federal government and provinces,” she said. “It does come down to the will of the government.”

Source: Health agency reveals race-based data guideline as calls grow for nation-wide collection 

2016 report warned about public health data reporting problems Canada is facing with COVID-19

Apparently, an ongoing issue, and hard to see any rationale for not having consistent national data across all provinces (Quebec will always be difficult in this regard given the health jurisdiction arguments and jurisdictional issues cannot be tossed aside). And of course, more desegregated data, including ethnic and racial backgrounds, is needed:

A clear picture of the fight against COVID-19 is being hampered by lack of consistent data about the virus across the country, Canada’s Chief Public Health Officer Theresa Tam said Wednesday.

But the problem of sharing such data among provinces was flagged four years ago in a report commissioned by the nation’s top public health officers.

Failure to put in place a mechanism for data surveillance across the country would have negative consequences for people’s health, said the 2016 report.

Despite that report inadequate data sharing information has been a problem during the COVID-19 crisis, Tam admitted Wednesday.

“Data is extremely important obviously to any outbreak,” she said. “There’s obviously some gaps particularly in reporting to the national level that we do have to address.”

The 2016 report was commissioned by the Pan Canadian Public Health Care Network, a group designed to coordinate the work of the nation’s top public health officers. It flagged that Canada’s public health surveillance system was inadequate, with inconsistent data sharing between provinces, a lack of common standards and gaps that could hamper a response to a virus like COVID-19.

The network’s report was a blueprint for how to create a more unified system for public health, one where all provinces looked for similar problems and collected data in a similar way. It found provinces collected data differently and didn’t have consistent standards when it came to monitoring for disease outbreaks.

“The lack of a mechanism to align surveillance standards across Canada is a missing pillar of surveillance infrastructure that holds the potential to delay the early detection of outbreaks and is a barrier to better understanding chronic diseases and injuries, resulting in negative consequences for the health of Canadians,” reads the report.

Since the outbreak began, not only have Canadian provinces counted their COVID-19 data in different ways, they have also switched their methodologies during the outbreak.

While some provinces use fully electronic systems to report new cases and trace the contacts of people who are infected, it has been revealed that others still use fax machines to report the information.

The network’s report found data sharing was done on an ad hoc basis with informal agreements, but no consistent rules. Tam said that has been a barrier during this crisis and policy makers at all levels are trying to address it.

Before the pandemic, the network aimed to bring together public health agencies across the country into a common set of standards by 2022. Health care is a provincial jurisdiction and provinces have consistently resisted any efforts for the federal government to regulate any part of their systems.

Tam said some of the issues around information sharing have been addressed, food-borne illnesses as an example are well tracked with good information sharing between provinces. In the case of COVID-19, a respiratory illness, she said there are still barriers.

“It is absolutely recognized also at the first ministers level that this is another chance for us to improve on what we are doing,” she said. “Capitalizing on the crisis that we have, we need to give it another good go for the next piece.”

She said the data on COVID-19 now comes from a wide-array of sources.

“It’s the complexity of the Canadian landscape of data, some data has to come from hospitals, some comes from labs, some comes from local public health units.”

The network’s report noted that the European Union had managed to pull together a more uniform surveillance system over a five year span, creating the European Centre for Disease Control, despite having to merge 27 countries and 23 official languages into one system.

A report into the SARS crisis in 2003 made similar recommendations about sharing information, arguing that a disease outbreak required a federal response and it should have all the necessary data to make decisions.

It called for a stand-alone public health agency with the authority to gather data from the provinces, which led to the creation of the Public Health Agency of Canada.

Testifying at the House of Commons health committee on Wednesday, Amir Attaran, a law professor at the University of Ottawa, said this jurisdictional issue should be tossed aside.

“It is good for the federal government to let provinces run their show, and that’s normally how it should work,” he said. “ But I’ll suggest that a pandemic is not normal times, and there comes a point where the federal government must step in — the point where provincial actions are killing Canadians.”

Attaran said the federal government has the power to step in and demand sharing of data and it could also use that authority to demand better testing from the provinces. He said both these steps should be taken despite the jurisdictional challenges because lives are at risk.

“If our country cannot show that once-in-a-century flexibility, then, yes, we are turning the Canadian Constitution into a suicide pact.”

Tam said where good data is most needed, the local level, it is available and accessible to decision makers. Local public health officials are able to track the virus in their communities and use it to do contact tracing and make other decisions.

She said what is missing is the bigger picture on how the virus is spreading across the country.

“It is important to get the national picture and to be able to provide that to policymakers as well.”

She said they need a deeper level of data than what is currently available to get a better picture of how vulnerable groups are being hit by the disease.

“We have the basic information, but I think what people need, and are asking for now is for what we call this aggregation, more in depth analysis,” she said. “Those are the kinds of things that we need to work on.”

Source: 2016 report warned about public health data reporting problems Canada is facing with COVID-19

Canada’s COVID-19 blind spots on race, immigration and labour

Yet another article on racial and economic disparities and COVID-19. Nothing new here and perhaps a sign that governments just need to get on with collecting the data. Should be a role for CIHI in this:

The low-paid and precarious positions in industries that are considered essential during the COVID-19 pandemic (sanitation, health care, and those in the food supply chain) are filled with women, recent immigrants, and racialized Canadians. Many of these workplaces are notoriously plagued with exploitative labour practices that, in many ways, contributed to the spread of the virus in the first place. Recent immigrants and racialized Canadians, notably Filipinos and Sudanese Dinka, who work in these industries, for example, meat-packing plants in Brooks, High River and Balzac, Alberta, are at great risk of negative health outcomes during this pandemic.

And, yet, we do not collect the necessary data in Canada on the social determinants of health for racialized minorities. Stories from across the country paint a bleak picture. In April, a 40-year-old Haitian asylum seeker contracted COVID-19 while working as a personal support worker. He died in his home after having been denied refugee status. In Toronto, researchers have recently connected positive COVID tests to neighbourhoods characterized by a higher proportion of visible minorities and recent immigrants, poor housing and low income.

There have been numerous calls to gather disaggregated data on COVID-19, health and race. After initial reluctance, the federal government and some provincial jurisdictions are now considering collecting more demographic data. We join our voices to the call and argue that Canadian governments need data not only on race and health, but also on immigration status during this COVID-19 crisis and beyond.

While collecting data on race will show that people of colour are disproportionately affected by COVID-19, we know that not all racialized Canadians are equally vulnerable to being exposed to this disease. From our work in community health, and gender and politics, we know that despite the best intentions of epidemiological approaches to the pandemic, marginalized groups face barriers to accessing and benefiting from public services. In fact, recent research by the University of Lethbridge’s Eunice Anteh shows that in places like Brooks, newcomers’ health profiles will vary based on numerous factors, including gender, race, language barriers, and the health and social infrastructures in their settlement locations.

We need longitudinal data that intersects the usual factors – gender, age, education, income, for example – with race and immigration profiles to enable policymakers to better understand the pathways and structures that create hierarchies of vulnerabilities within racialized and newcomer communities. This will enable public health officials to work with other stakeholders in eliminating the institutional barriers to health equity for all within our borders.

Intersecting reasons why some are more vulnerable to COVID-19

In Quebec, disparities in COVID-19 infection rates are shaped by the intersection of race, gender, immigration, labour, and public health. Health care workers account for 20 percent of infections, and in the hard-hit Greater Montreal area, up to 80 percent of the aides in long term care facilities are racialized women, mostly Black and Maghrebi. Industries of care are feminized and undervalued despite being critical to preserving the health and safety of the population.

For years workers have complained about these institutions’ chronic understaffing, high patient-to-aide ratios, and unsafe working conditions. As occurred in other provinces, the government subcontracted public services to private entities, with limited public oversight, enabling these institutions to avoid paying employment benefits by privileging part-time over full-time work. This left many health care aides with no other choice but to work at multiple sites to make ends meet. These are the conditions that upended Quebec’s response to COVID-19.

In Alberta, the links between race, immigration, labour, and public health manifested themselves in the food supply chain. Over 1200 COVID-19 cases were linked to the Cargill meat plant. Seventy percent of employees are of Filipino descent, most of whom work as general labourers amongst the lowest-paid employees, and some who have spouses working as health-care aides in Calgary. Public health officials named carpooling and crowded living arrangements as contributing factors to the rapid spread of the virus but overlooked labour practices and socioeconomic conditions that lead to shared living and transportation arrangements in the first place.

The second-largest meat packaging plant in Canada, JBS, is also facing an outbreak. It is the main employer in the city of Brooks, Alberta. A third of the population there are visible minorities, mostly from East Africa, South Asia, and Latin America. Today, JBS employees account for approximately 26 percent of Alberta’s active cases, and over 6 percent of Brooks’ population, one of the highest rates across Canadian municipalities. These outbreaks revealed mistakes and oversight linked to concerns around the food supply chain and showed the price that racialized and marginalized workers pay due to neglect and prioritization of profit over safety.

Temporary foreign workers are also at risk

As the agricultural season enters in full swing and concerns grow about Canada’s food supply chain, we must take stock of employment inequities in how we treat temporary foreign workers (TFWs) and the implications for overall community health and wellbeing. For decades TFWs from the Caribbean and Latin America have taken on work that Canadian often refuse to do, generally because of long working hours, unsanitary bunkhouses, and low wages. Many of these workers are reluctant to speak out about their work conditions given the precariousness of their employment and residency status, which are both tied to their employers.

These conditions, like those of personal service workers or meat plant employees, are not new or even unique to Canada. Across the world, industrialized countries depend on temporary migrant workers to sustain their basic infrastructures. Around the world and in Canada, it is clear that the temporary migration of racialized individuals serves as the backbone of essential services in Canada. From the West Indian Domestic Scheme (1955) and the Caribbean Seasonal Agricultural Workers Program (1966) to our modern TFW program, the utilitarian approach to immigration and the neglect of these populations have resulted in systematic and deep-rooted inequities that weaken health and safety institutions.

A lack of political will to address neglect

Why do Canadians tolerate these types of working conditions that can become public health issues during a crisis like COVID-19? Is it because of who is overrepresented in these fields: female, racialized, and immigrant workers who struggle to get substantive political representation? Some in the broader society rationalize these challenges by saying that newcomers are better off here than where they came from. Others turn a blind eye altogether to these conditions.

In reality, we ignored the working conditions of racialized and immigrant workers who help sustain our health and food supply infrastructures, and way of life.

Yes, we need to gather COVID-19 related data on race and immigration to better address the needs of vulnerable communities that also tend to work in essential sectors. But going forward, we also need long-term changes to what we consider to be health-relevant demographic data.

Provincial healthcare professionals need to pay as much attention to collecting data on race and immigration profiles as they do in collecting data on gender, education, and income. This data needs to feed into national environmental population surveys that will allow public health officers to tie specific demographic markers to health status over time. It will paint a clearer picture of social, economic, and health disparities between various communities and point to needed improvements and progress. This will also enable provincial health officials to identify variations and gaps between federal and provincial jurisdictions. For example, while refugees are resettled and supported by the federal government, their access to health services is the responsibility of the provinces.

Finally, this data should then be the starting point for engagement between public health officers, immigration and labour policy-makers, and relevant stakeholders from relevant industries. Together, they can help develop more robust social and labour protection for racial minorities, newcomers and migrants. We need to be invested in the health and work conditions of racialized and immigrant populations in Canada, not only because, as COVID-19 has demonstrated, safety for them means safety for all, but most importantly because this is what this country says it stands for.

Source: Canada’s COVID-19 blind spots on race, immigration and labour

How Canada’s crucial data gaps are hindering the coronavirus pandemic response

Good long read on data gaps. Have excerpted the intro and the section on the lack of visible and ethnic minority data:

Gaps in key health and economic data are hindering Canada’s response to the COVID-19 pandemic, leaving Canadians in the dark about who is being infected or struggling with the devastated economy, say researchers, politicians and scientists.

These blind spots could blunt the federal economic rescue effort, hide inequities in deaths from the disease and slow our emergence from self-isolation in the months ahead. Experts are urging provincial and federal leaders to open up more streams of data immediately, as doing so might save lives and livelihoods.

Canada has a long-standing problem of information gaps, The Globe and Mail found in a year-long series, and that has left us vulnerable during public health crises before. A government audit found that during the 2009 swine flu pandemic, data deficiencies left the Public Health Agency of Canada “unable to answer basic questions such as the rate of spread” of the virus.

….

Nationally, the ethnicity of those who have been infected or have died is unknown. Because of data gaps, the death toll likely is being underestimated.

On the economic front, Canadians don’t know how many in each province are applying for employment insurance every week (as the United States does by state). They don’t have up-to-date numbers on bankruptcies, mortgages in arrears, how workers in the gig economy are faring, the extent of layoffs or the degree to which the federal government’s plan for an enhanced wage-subsidy program has spurred rehiring.

Arjumand Siddiqi, the division head of epidemiology at the University of Toronto’s Dalla Lana School of Public Health, said she and her colleagues are eager to help analyze the fast-moving crisis to a greater extent, but have been stalled by a lack of detailed figures on the demographics and locations of confirmed cases, among other things.

“We have the will, we have the expertise, but we don’t have the data,” she said. “It would be good to know what is actually happening.”

One of the most pressing gaps, Dr. Siddiqi said, is information about the ethnicity of those who have tested positive for COVID-19 or died of the disease. No Canadian province makes this data available, in keeping with a long-standing national aversion to publishing statistics about racial disparities in health. (Toronto’s Medical Officer of Health, Eileen de Villa, has announced that the city is exploring ways to collect race-based coronavirus data on its own.)

But there is reason to suspect race may be a factor in determining who is being infected and dying from the virus, Dr. Siddiqi said, both because of the prevalence of various underlying health conditions in some racialized communities, and their over-representation in low-wage jobs such as nursing, delivery and retail, which make them highly prone to exposure to the virus. Early U.S. data indicate that black Americans are being admitted to hospital and dying from COVID-19 at a disproportionate rate.

“We are very clear that we want to know who is at risk,” Dr. Siddiqi said. “But we’re just very hesitant – and that’s kind of putting it mildly – to add race to the set of dividing factors that we’re willing to entertain.”

This blind spot extends to Indigenous people, whose health care is largely provided by the federal government. NDP MP Charlie Angus would like to change that. In a letter to Health Minister Patty Hajdu last week, he urged the government to start keeping data on COVID-19 cases among Indigenous people, saying, “It would be irresponsible at this time to turn a blind eye to the movement of COVID through vulnerable populations.”

“It seems bloody obvious that you would want to track this and make policy based on this information,” he said in an interview. “I think there’s a naive arrogance in the principle of saying: ‘We’re not the United States, we don’t have their problems, we don’t discriminate like that.’ ”

Even government-funded groups such as the Canadian Institute for Health Information (CIHI) have begun calling for race-based data around coronavirus cases. The organization now supports the idea of health care providers asking a common question about the race of COVID-19 patients and says it would be willing to compile the data.

“The COVID pandemic is certainly exposing gaps in important data flows within and between health care systems in Canada,” CIHI spokeswoman Alex Maheux said.

Source: How Canada’s crucial data gaps are hindering the coronavirus pandemic response ‘We have the will, we have the expertise, but we don’t have the data’: Nationally, the lack of coronavirus-related health and economic data is stalling efforts to analyze the fast-moving COVID-19 crisis

Being Counted in Canada’s Coronavirus Data, Ontario’s lack of diversity data for COVID-19 is an embarrassment

Two good commentaries on the lack of diversity data, starting with Howard Ramos of Dalhousie:

The lack of COVID-19 data on immigrants and racialized minorities collected and shared by Canada’s many layers of government could lead to health inequities.

Canada is not alone in having a data gap on immigrant and racialized groups. In the United States civil rights groups and doctors have called on its federal government to release demographic data on coronavirus infections.

Analysis that looks at the number of COVID-19 cases based on publicly available American data and census information shows that counties that are majority African-American have three times the rate of infection and almost six times the rate of deaths as counties where white residents are in the majority. It is a trend that has raised alarm across American cities.

Understanding Canada-U.S. differences

Past research suggests, however, that Canadians should be cautious in reaching conclusions and not automatically assume that what takes place in the U.S. naturally holds true north of the border.

The ‘healthy immigrant effect’ debate, for instance, which shows that many newcomers to the country self-report better health than native-born Canadians may mean that immigrants, who are also largely racialized, may not follow the same patterns as seen in the U.S.

What is needed to answer that question, and many others, is access to quality data. And just like personal protective equipment – it is currently in short supply.

Part of the problem in capturing immigrants and racialized groups in health data rests with how they are captured. Health data is largely the domain of provinces and territories, leading to uneven data collection and reporting across them.

When asked if Ontario could offer insights on the pandemic’s impact on racialized communities, Dr. David Williams, the province’s chief medical officer of health, noted that “statistics based on race aren’t collected in Canada unless certain groups are found to have risk factors.”

Ironically, if data are not collected, one cannot tell if a group has risk factors to begin with. This could lead to health inequities for African-Canadian, Indigenous, racialized, and other new Canadians.

That scenario is a big reason why the African, Caribbean and Black Network of Waterloo Region recently launched a petition demanding that data on race, ethnicity, sexual orientation, and socio-economic status be collected and reported on.

Data gap flows all the way to Ottawa

The data-gap is also seen at the federal level too. For instance, the new and innovative crowd sourced survey on the social and economic impacts of COVID-19 run by Statistics Canada measures age and gender but not other demographic features. The same absence is also seen in the Public Health Agency of Canada’s ‘detailed confirmed cases of coronavirus disease’ data, which is hosted by Statistics Canada.

The detailed data does not provide geo-coding or additional information on the location of the cases which means that researchers cannot link it to census tracts or other geographic units to do the kinds of analysis that was done for American communities.

As a result, the maps offered through the interactive Canada’s COVID-19 Situational Awareness Dashboard are fairly coarse. In many cases, more detailed information can be found through non-governmental sites such as ViriHealth. But, once again, sociodemographic characteristics are not provided and the location data is where people are treated over where they live.

Lastly, once Canada begins to move towards recovery, Statistics Canada’s data on job loses and employment can report on immigrants and racialized groups. Much of this data is collected through the Labour Force survey, which is good news. It’s only logical that measures of health and wellbeing be captured with the same level of detail.

If there’s one thing silver lining to Canada’s experience during the COVID-19 pandemic, it’s reinforcing the point that collecting data matters. It’s essential to insure that everyone, regardless of race or ethnicity, is treated equally as citizens.

Source: newcanadianmedia.ca/being-counted-…

Secondly, the Ontario situation by Adam Kassam a Toronto-based physician:

The United States recently earned the unfortunate distinction of having the highest number of COVID-19 cases in the world, at more than 575,000. The true number of infected individuals, of course, is likely much higher given the lack of widespread and available testing.

But in that U.S. data, an alarming trend emerged: The coronavirus appeared to be disproportionately killing African-Americans. Last week, the Centers for Disease Control and Prevention (CDC) released a preliminary report suggesting that there were higher rates of hospital admissions and death among black Americans compared with other communities.

These revelations have intensified a nationwide conversation on the social determinants of health and the necessity to collect better data. The CDC report is far from comprehensive, which has led to presumptive Democratic nominee Joe Biden calling on the organization to be more transparent by releasing more information. Even U.S. President Donald Trump has expressed concern, and instructed his African-American Surgeon-General, Dr. Jerome Adams, to formulate a federal response to address the problem.

This discourse about diversity data and its impact on racialized communities in the U.S. stands in sharp relief against the Canadian experience. Last week, Dr. David Williams, Ontario’s Chief Medical Officer of Health, summarily dismissed calls for the collection of racial data. He asserts that statistics on race aren’t collected unless certain groups are found to have risk factors, and that “regardless of race, ethnic or other backgrounds, they’re all equally important to us.”

We have a problem in this country when Donald Trump sounds more progressive about racial disparities than our own public health officials. Imagine if our Chief Medical Officer of Health claimed that it wasn’t important to collect gender-based data? This would be a fireable offence. It is, therefore, inconceivable that this same official, in the country’s most diverse province, would willfully choose to effectively ignore the unique needs of the nearly four million visible minorities who call Ontario home.

This is the manifestation of structural and systemic biases that have been omnipresent within our medical community for generations. Canada’s poverty of diversity data has been an indefensible blind spot, both in terms of health care and in our educational institutions. It is the symptom of an insidious disease, whose current hallmark is a leadership that looks increasingly less like the communities which it serves.

How else could you explain the dearth of visible minorities in some of the top leadership roles in health care across Ontario? Public Health Ontario’s executive does not appear to include a single visible minority. A visible minority has never served as Ontario’s health minister. And because diversity data of this nature is not collected or made public, we don’t know how many deputy ministers of health, deans of medicine or chiefs of medical departments have represented diverse backgrounds.

In many ways, you only measure what you really care about. Ontario’s Chief Medical Officer has unfortunately made that very clear. Never mind that collecting race-based data wouldn’t be an onerous task; crucially, it is part of good science. Only by intentionally studying diverse populations have we learned that women experience certain health challenges, such as heart attacks, differently from men. In the same vein, disease has been shown to manifest differently for patients from different ethnic backgrounds. It is my belief that all people deserve to know the details of their lives and to know that their lives are worthy of study.

While we don’t know whether racial differences influence COVID-19′s effect on individuals, Canada should be invested in determining this definitively, instead of taking its cues from the World Health Organization.

Early reports from the U.S. have pointed to disadvantaged and marginalized groups – the poor, immigrant, black and brown communities – being more significantly affected, and this has prompted crucial scrutiny of the deep and enduring fault lines between the haves and have-nots. Yet we cannot have those conversations here, as we cannot know whether the U.S. data reflect Canada’s, even though just a border separates us.

In Canada, where we are quick to declare that diversity is our strength, we must now dispense with the empty platitudes and put our money where our mouth is. Our governments should openly commit to funding the collection and publication of diverse health data during and after this pandemic. Their explicit goal should be to create policy that improves the health care of all its citizens. What’s clear is that this ethos will only become a priority when our medical leadership more closely reflects the Canada of today.

Source: Ontario’s lack of diversity data for COVID-19 is an embarrassment: Adam Kassam

Paradkar: Unlike Canadians, Americans at least know how Black people are faring with COVID-19 (very badly)

Agreed but not only a Black issue.

Need better health data on all visible minority groups (and Indigenous) given that poorer health outcomes generally go hand-in-hand with more vulnerable socioeconomic outcomes:

“Let me rant,” said Angela Robertson, “because you’ve sparked me.”

As executive director of the Parkdale Queen West Community Health Centre, Robertson has long been a front-line witness to the lives of the most marginalized in the city — the homeless, the undocumented, the working poor — all of whom are also disproportionately racialized.

We are discussing the horrendous data streaming from the U.S. on the rates at which COVID-19 is infecting and killing Black people. In Chicago, African-Americans account for 70 per cent of the 86 recorded deaths, but make up 29 per cent of the city’s population. Louisiana saw the same 70 per cent of deaths among African-Americans who constitute just 32 per cent of the population.

What about Black people in Canada, I ask her. Are they better off here compared to the U.S because of universal health care and because — here I wave the red flag — Canada is not as bad as the U.S.?

“As much as we have critiques of the health-care system in America, they have done data collection, they can disaggregate by race within health care,” she said.

“We in Canada have been glacial in our movement in the collection of race-based data in our health-care system. As a result we will not be able to identify the disproportional access challenges, deaths, illnesses that Black communities will experience as a result of COVID-19.

“My fear is that the real health impact on Black community will be hidden.”

COVID-19’s impact on Black people is highlighting the similarities and differences between the U.S. and Canada. They collect data. We don’t. We have universal health care. They don’t. But underlying structures in both nations are deeply racist, which means Black people on both sides of the border live in circumstances that leave them more vulnerable to illnesses at the best of times — and now make them susceptible to the ravages of the pandemic.

These structures are unleashing what the American author and anti-racism scholar Ibram X. Kendi called “a racial pandemic with the viral pandemic.”

Last Friday, Black health leaders in Toronto released a statement that identified the underlying risk factors that COVID-19 would amplify. “Ontario is home to the largest proportion of Black people in Canada. Here too, as in the rest of Canada, race is a determinant of health,” they said.

Who are the people who still need to use public transport to get to work? Who hold precarious jobs? Who don’t have the luxury to shelter at home and buy healthy provisions for a week or two? Who need rent relief? Who are most at risk from higher policing on the streets? Who are at risk in the prison system?

While race-based data exists around these social factors, hospitals and clinics don’t collect detailed demographic data including race as a matter of routine. Advocates have long railed against this lack of data, calling it harmful to Black women after research found they may be underscreened for breast and cervical cancer.

Andrew Pinto is a doctor at St. Michael’s Hospital. He is also the director of the hospital’s Upstream Lab — a research group that looks at interventions or remedies to the socio-economic factors that affect health.

The St. Michael’s Hospital Family Health Team, and other groups in Toronto including Toronto Public Health, was part of a pilot program to ask patients questions on income, race, gender, housing, religion, etc., and then use this data to identify health inequities, Pinto said. Researchers found doing such a survey was “feasible and acceptable.”

“Social factors are definitely associated with health outcomes,” he said. Many studies show income and race play a big role. “We lack the data that we need in Canada to really be able to pinpoint inequity by race. That’s what our work is trying to move toward.”

Why do we need the data if we know discrimination already exists? “Data helps with accountability. It’s not just to document inequity. We need to anticipate the inequity and think about how do we hold our systems to account.”

On the plus side of the ledger against the U.S, Canada has universal health care. Even then there are gaps.

While Ontario advocates who campaigned under OHIP For All managed to open health care for people regardless of their immigration status, “what we are concerned about while policy has changed, practices on the ground have not changed,” Robertson said.

Even during the pandemic, Robertson heard reports of people turning up in emergency departments and being asked to pay $500 for treatment.

What about the people who don’t turn to agencies for support? “For folks who because of fear walk away, they walk away ill,” she said.

Pinto points out that the “danger of data collection is it can convey that something is being done. Data alone is not sufficient. There has to be commitment that it should come with change.”

In a crisis like this, governments at all levels have to look at their response policies through the eyes of the most vulnerable and account for bias. This is particularly important for Black people who are among the most discriminated people here.

If this is not done, as the Black leaders’ statement said, “Black people will be exposed to greater harm.”

No time to fly blind: To beat COVID 19, Canada needs better data

As we always do! Bit surprised no discussion of what role the Canadian Institute of Health Information (CIHI) could play:

Accurate information is critical to fight a health emergency like the COVID-19 pandemic. Robust data identifies the scale of the problem. It enables the prioritization of human, financial and material resources for an effective and efficient response. It allows for public scrutiny, advocacy and accountability. It builds trust. It provides authorities with tools to counter misinformation. It will enable us to slowly and safely return to economic and social activity.

In short, good data can mean the difference between life and death – or in the case of a pandemic, tens of thousands of deaths. Yet in the face of the greatest international health crisis in a generation, Canada is falling short.

Prime Minister Trudeau promised better data. To deliver on this promise, the Public Health Agency must mandate standardized information reporting for provincial and district public health authorities. These standardized templates would outline the data and information to be reported, how it should be collected and how it should be shared. Moreover, the Agency should urgently provide financial and technical resources to improve information management at all levels of the public health response.

At first glance COVID-19 data appears to be plentiful – case numbers and graphs are splashed across news reports and public health websites. Public health agencies produce epidemiological reports with colourful graphs and charts. Officials quote modelling estimates of projected case numbers and fatalities.

But in reality the value  of this information is limited. Efforts to fill in information gaps with modelling is a short-term and imperfect substitute for real-time data.  The data that does exist is of questionable validity given low testing numbers within the population and delays in receiving test results. Moreover, the data is not gathered, compiled or presented in a consistent manner by health authorities across the country. Different case definitions make comparison within and across provinces difficult. Sex and age disaggregated figures are not always provided. Some areas report hospitalization and intensive care unit numbers, some do not. Warnings of medical equipment and personal protective equipment (PPE) shortages are widespread, yet inventories of PPE stockpiles are frequently not given.

Moreover, public health officials report cases but do not discuss population context. They do not present important statistics about communities including age, sex and socio-economic data and specific vulnerabilities. Authorities rarely provide information on the number of health workers employed in the response, hospital beds available or PPE stockpiles. Officials cite testing numbers with little concrete data on laboratory capacity or efforts to expand it.

It is confusing. Overwhelming. And unhelpful.

Without accurate data and information, authorities cannot identify and manage human, financial and material resources to engage in the fight against COVID-19.  Nor can they monitor the effectiveness of interventions and stop its spread.

We can do better. During humanitarian crises, which often occur in data-scarce contexts, central coordinating bodies prioritize the collection and transparent dissemination of information. They develop standardized “Situation Reports” at multiple levels – the community, the region and the country – to identify need, prioritize interventions and target scarce human, material and financial resources. In the health sector, reports include population size disaggregated by sex, age and vulnerability; the number of health facilities in operation; key causes and rates of illness and mortality; medical procedures and treatment courses. These reports are published openly and disseminated widely. Information is critical for an effective and efficient response in complex and rapidly changing environments. It allows resources to be targeted to save lives.

COVID-19 warrants something similar. We need to understand the progress of the disease and our response – in real time. Proper information management will not only improve the effectiveness of our interventions, but it will also enable the safe resumption of economic and social activity.

A standardized reporting template would include case numbers and hospitalizations (sex and age disaggregated).  But counting the numbers of outbreak cases is only one piece of the information puzzle. Reports should include community baseline data. Important information includes population demographics (age, sex and particular vulnerabilities), neighbourhoods with higher risks, and the number of vulnerable institutions (retirement and nursing homes, corrections facilities). Authorities would identify financial, human and material resources available and required. Reports should document laboratories with COVID-19 testing capacity and provide inventories of PPE.

Better data would allow us to identify critical intervention points to stop the spread of COVID-19 and to slowly get our lives and economy back on track. The lack of prioritization on testing is both a symptom and a consequence of Canada’s failure to prioritize information management. Given testing capacity, public health officials discourage tests for those with mild symptoms. This undermines the validity of most of the numbers used by public officials to track the COVID-19 outbreak. Without the total ‘real’ numbers of individuals infected, we lack an accurate denominator, which undermines the accurate calculation of hospitalization or case fatality rates. Lag times in test results also make accurate contact tracing very difficult.

More critically, without expanded testing, we lack the ability to quickly test health workers and those employed in other essential services (such as retirement homes) to protect them, their co-workers, patients or residents and the public. Nor do we have the ability to test people to gradually and safely scale up economic and social activity. Instead we are told to wait for testing innovations while COVID rates numbers rise. Yet many private labs as well as lab facilities in university and colleges remain unutilized over three weeks into Canada’s full scale COVID-19 response. With better information would come increased accountability for mobilizing such capacity.

COVID-19 has sparked one innovation in information production – the use of outbreak models to guide public health responses to COVID-19, often funded by public health authorities. The federal government recently provided $192 million to BlueDot – a Toronto based digital health firm, not a university research department – to support its modelling activities. After calls to release modelling estimates, some provincial governments have provided projections of case and mortality numbers.

But transparency warrants more. Modelling in general is extremely challenging and COVID-19 modelling is particularly complex. Population demographic characteristics appear to determine the speed of COVID-19 transmission as well as severe illness, hospitalization and fatality rates. While the professionalization of the modellers is not in question, research driving policy decisions should be published openly and subject to scrutiny. The lack of clarity contrasts unfavourably to models published in scientific journals, or those published online by Professor Neil Ferguson of Imperial College, University of London. If governments release model estimates, they should release the assumptions and data that inform these estimates.

Moreover, modelling is an imperfect and flawed substitute for real data and concrete information about the response. Policy makers urgently need to pay attention to the generation and management of accurate and valid data, mandate standardized reporting from all public health authorities and provide public funds to make it happen.

We are in unprecedented public policy territory. Yet we lack the information needed to effectively navigate the COVID-19 pandemic and get our economy and our lives back on track. Prime Minister Trudeau’s commitment to better data and improved information management provides Canada’s Public Health Agency with the opportunity to exercise leadership. It is time to up our game.

Source: No time to fly blind: To beat COVID 19, Canada needs better data

Andray Domise: The deterioration of data is robbing marginalized communities of their voice

The Globe’s ongoing series on Canadian data gaps is welcome and continues to draw attention to the gaps. As someone who relies on various data sources, particularly the Census, I find these concerns reasonable when it comes to health outcomes, incarceration rates, foreclosure data, children’s aid, police checks.

I am less convince, however, in some of the other areas. We do collect race-based data (visible minorities) in the Census which has finer gradations than the US Census (11 categories compared to 5 in the US). Census data allows analysis of participation and unemployment rates, average and median income, low-income, highest level of educational achievement, areas of study, employment in the public sector (federal, provincial, municipal, healthcare, education, social services, police) and whether in more senior or support positions.

In education, as I have argued earlier (Karen Robson: Why won’t Canada collect data on race and student success?), we actually have good data in terms of the outcomes of the different visible minority groups and the absence of comparable data to the TDSB data from other school boards is more a “nice-to-have” than necessary (see my analysis of education outcomes Education fields of study and economic outcomes).

Researchers and others will always want more data. How this gets priorized and implemented requires some choices given resource implications. In the meantime, researchers should explore creative ways of teasing out the insights from existing data sources:

The Institute for Policy Studies released a study last month on median wealth in American households, and the findings were unsettling, if unsurprising. While the inflation-adjusted median wealth of white families in the United States had grown from US$110,160 to US$146,984 over the past three decades, it had hardly increased at all for Hispanic families (US$4,289 to US$6,591), and dropped by roughly half for Black families (US$7,323 to US$3,557). By 2082, the study concluded that, should current trends hold, the Black family will have a median net worth of zero.

I posted excerpts from the study online, and an acquaintance of mine asked how Black families in Canada compared with their U.S. counterparts. I had no idea, I said. In Canada, we don’t collect, study and distribute such information.

This has long been a point of frustration. When I was a financial planner in a previous life, I often found myself having to debunk misconceptions about the ever-shrinking middle class. One of the more pernicious narratives was the long-term effects of the 2008 financial crisis, which, more than a decade later, many still erroneously blame on irresponsible, low-income “deadbeat borrowers.”

A 2010 study conducted by the American Sociological Review, I would note, found that banks not only targeted low-income areas for risky and complicated subprime loans, but denied traditional loans to qualified Black and Hispanic applicants, effectively creating a segregated class of borrowers who were disproportionately impacted when the interest on those loans skyrocketed.

A slew of follow-up studies in the United States eventually spurred federal investigations, which found that lenders did engage in discriminatory and predatory practices. One of the worst offenders, Wells Fargo, was hit with a US$175-million judgment in 2012 for saddling non-white borrowers with higher interest and worse deals on their mortgages than their white peers of similar credit standing.

Without publicly available municipal census metropolitan data, federally legislated land data and foreclosure information from private oversight agencies, not only could banks have gotten away with enriching themselves through illegal lending practices, there would have been no counternarrative to the myth that broke borrowers of colour collapsed the global economy.

And equivalent data, available and freely usable for such comprehensive studies, does not exist in Canada.

Not so long ago, the collection of race-specific data was seen as unseemly at best, and targeting at worst. That data was often used as a cudgel by police forces to stereotype marginalized communities, and often there was no counternarrative offered. But now, with data analysis having become essential to the global economy and our political systems, everything boils down to the numbers. Geopolitics are being tilted and societies are being reshaped by information asymmetries. Avoiding discussions about race has effectively left policy-makers wandering blindfolded through a forest, at the expense of communities of colour.

Our federal and provincial governments, for instance, have responded to increasing conversation about racialized state-sanctioned violence and discrimination by declining to quantify the problem. Even as policing agencies across the country tout the value of street checks as a tool for preventing and solving crime, data on their efficacy have typically not been studied nor reviewed by independently operated and funded oversight agencies. In Edmonton’s case, the police service funded a study in which the dataset was described as “contaminated” by officers’ subjective evaluations; in Vancouver, the data was only released to the public after a Freedom of Information request. Meanwhile, in Ontario, a report by a provincial judge declared it bluntly: “There is little to no evidence that a random, unfocused collection of identifying information has benefits that outweigh the social cost of the practice.”

While Canadians thank the heavens we don’t experience the statistically proven dysfunctions in the United States’ health, financial and public-safety systems, that gratitude is rooted in ignorance. We know that south of the border, Black mothers are three times as likely to die during childbirth as their white peers, but Canadians have no way to understand the scale of the Indigenous child-welfare crisis beyond the blunt sum of Indigenous children being funnelled into the children’s aid system. We have no aggregated national data on maternal (or even infant) mortality rates among specific ethnic groups, preventing Ottawa from creating targeted health policy. We have no comprehensive data on sexual-health practices among teens and young adults, which effectively granted the Ontario government carte blanche to roll back the sex-education curriculum by 20 years.

Time and again, marginalized communities have had to rely on an irregular flow of data to validate our stories and lived experiences – forced to marshal math in support of our stories that broader Canadian society too often dismisses as hysterics. Canada’s data deficiencies are not merely problems of public policy: They reflect an unacceptable level of neglect that’s become an obstacle to our ability to advocate for ourselves.

Source: The deterioration of data is robbing marginalized communities of their voice

The related Globe article: How Canada’s racial data gaps can be hazardous to your health

 

In the dark: The cost of Canada’s data deficit

This incredibly valuable investigative reporting. I have excerpted a few of the sections I found most interesting but the entire article is worth a good read, and I look forward to future segments in this series.

I use StatsCan and other data frequently and generally find I can find what I need, or an alternate way to identity issues and trends. So I do have some sympathy for StatsCan Head Anora’s comments that sometimes researchers don’t try hard enough (e.g., see my critique of Karen Robson: Why won’t Canada collect data on race and student success?, weak to non-existent municipal diversity statistics can be found in census occupation group data).

But the example of birth statistics is where I cam up short. The vital statistics agencies do not capture visible minority data or accurate residency data, and do not verify identity documents of the parents. All of which mean, in addition to the all important health-related differences, that births to non-residents are drastically undercounted by StatsCan (in the end, I found better if imperfect numbers from hospital financial statistics: Hospital stats show birth tourism rising in major cities).

I look forward to their analysis of the data available on the government’s open data website as I did an analysis a few years back on the IRCC datasets, the most comprehensive ones available, but where timeliness is becoming an issue (IRCC Datasets: What they say about government priorities):

….

And yet, in fields ranging from public health to energy economics to the labour force to the status of children with disabilities, there’s a lot that Canada simply doesn’t know about itself.

Consider that we don’t have a clear national picture of the vaccination rate in particular towns and cities. We don’t know the Canadian marriage or divorce rate. We don’t know how much drug makers pay the Canadian doctors who are charged with prescribing their products. We don’t have detailed data on the level of lead in Canadian children’s blood. We don’t know the rate at which Canadian workers get injured. We don’t know the number of people who are evicted from their homes. We don’t even know how far Canadians drive – a seeming bit of trivia that can tell us about an economy’s animal spirits, as well as the bite that green policies are having.

Our ignorance is decades in the making, with causes that cut to the heart of Canada’s identity as a country: provincial responsibility for health and education that keeps important information stuck in silos and provides little incentive for provinces to keep easily comparable numbers about themselves; a zeal for protecting personal privacy on the part of our statistical authorities that shades into paranoia; a level of complacency about the scale of our problems that keeps us from demanding transparency and action from government; and a squeamishness about race and class that prevents us from finding out all we could about disparities between the privileged and the poor.

But if the problem has deep roots, it has never mattered more. We live in a data-driven age, when the internet and the processing power of computers has made it easier than ever to hoover up statistics about a society, make them public and accessible, and crowdsource better decisions about how to deliver everything from income support to green incentives to job training. Governments around the world have harnessed that power to make themselves smarter, leaner and more effective.

But government data are a different thing. It’s the information that various ministries, agencies and bureaus collect about citizens through administrative sources – such as tax filings and birth records – and questionnaires such as the census and community surveys. And unlike the tech companies that probe our digital lives for profit, governments aren’t in the business of caring what the numbers say about us individually: They’re looking for patterns.

The best way to spot trends is to enlist the public’s help by making your data open. At its best, this produces a charmed cycle: The government collects numbers, makes them anonymous and puts them on a website; a researcher, or even an ordinary citizen, notices something in the numbers (a spike in deaths! or a decline in productivity!); the government hears the alarm and can begin figuring out ways to address the problem.

….

In Canada, though, this cycle too often breaks down. Either the government hasn’t collected the relevant numbers or it won’t make them public. Important questions go unanswered. That’s especially dangerous for Canadian patients: Our health-care system is pockmarked with data gaps that leave people unsure of the quality and integrity of the care they’re getting, and leaves us in the dark about whether the system is meeting people’s needs.

….

No one asks themselves that question more often than academics. They are patient zero for Canada’s data-gaps epidemic. And the frustration they experience has implications for us all: When scholars work without access to proper data, they are unable to tell us stories about our world and ourselves that can only be unearthed when expert analysis is applied to a thorough rendering of the raw facts.

Lindsay Tedds, a professor of economic policy at the University of Calgary, has been struck recently by the difference, between the United States and Canada, regarding one of the most fundamental subsets of demographic data: birth records.

To begin with, the standard U.S. certificate of live birth collects all kinds of detailed information about the child’s parents – particularly their level of education and their race. “We know that African-American women die in childbirth at an alarming rate. We know that non-white babies are born smaller and earlier,” says Prof. Tedds. “Both of these factors are highly related to [the] poverty of the parents.” In Canada the picture is far less clear. “Imagine,” she says, “if we had similar detailed, population-level data, including for pregnancy and birth outcomes, for Indigenous moms.”

But even if the records were more detailed, she notes, the information would be harder to dig out: “The United States birth data, you just go onto a website and download it.”

In Canada, by contrast, birth data are kept in a series of facilities called Research Data Centres – the bane of many researchers trying to unlock tricky problems in Canadian social science. Statistics Canada opened the first RDC in 2000, with the aim of giving researchers access to so-called confidential microdata – the previously hidden guts of Statscan’s collections, such as census responses, health-survey results and birth records – without compromising anyone’s privacy.

But while they contain a rich trove of data, the fact that it is embedded with potentially identifying details about individual Canadians – not names, which are scrubbed ahead of time, but occupation and gender, for example – means that researchers must jump through a series of bureaucratic hoops before they can get their hands on it. Wendy Watkins, a Carleton University sociologist and former Statscan analyst, calls the centres “little data jails.”

There are 30 RDCs across Canada, almost all on university campuses – although Brandon, Sudbury, Trois-Rivières, Charlottetown and Peterborough, Ont., all university towns, have no such research centres. There are no RDCs at all in Nunavut, Yukon or Prince Edward Island. Because researchers have to visit them in person, that often means travelling hundreds of kilometres.

And that journey only gets them to the jailhouse gates. Then the real hurdles emerge. These can include providing a five-year address history, submitting a research proposal well ahead of time, and being formally sworn in as a government employee for the duration of your visit, complete with a legally binding oath of secrecy. If you are not a graduate student or university faculty, you’re likely to face more than a dozen steps before being able to actually publish your research. In some cases, researchers have to pay a sizable fee – routinely more than $5,000 – to access the information.

“I had to get fingerprinted,” says Prof. Andersen of Western, “even though I had my passport. What did they think, I was faking my passport?”

In other countries, the kind of data we keep cloistered in RDCs for privacy reasons is often simply scrubbed of identifying details and opened to the public. Says Calgary’s Prof. Tedds, “We know enough about how to censor and anonymize data that those concerns … they shouldn’t be concerns.”

Placing the burden of security onto individual researchers, in turn, means that reams of information, painstakingly gathered by our government and waiting to be sorted, distilled and interpreted – and, possibly, put to use improving Canadian lives – remain untapped. “I’ve had a few colleagues tell me they don’t study Canada because it’s too much of a pain in the neck,” Prof. Siddiqi says. “Of course I also want to study Canada, but at a certain point you have to throw your hands up.”

The recent controversy over Statscan’s plan to request customers’ personal financial data from Canadian banks might have given the impression of an outfit with a cavalier attitude toward privacy. In fact, the episode was deeply out of character for the agency. Typically, Statscan suffers from the inverse problem, what former assistant chief statistician Michael Wolfson calls “excessive privacy chill.”

The secrecy, bureaucracy and plain eccentricity that have come to characterize the country’s central data-gathering agency are far from unique among federal departments and ministries. Almost every one of them gathers and publishes its own significant stores of data – and Canada’s Auditor-General has spent years quietly pointing out how badly they tend to manage the task.

Glenn Wheeler, a principal in the federal watchdog’s office, says ministries often don’t gather enough data about their own policies to have a good sense of whether those policies are working – or don’t release enough data to convince the public, which is paying for the programs through tax dollars. “It’s a serious issue we find across our audits, across departments, across a number of years,” he says.

What Mr. Wheeler doesn’t mention, but is hard not to notice, is the number of data gaps that threaten to undermine policies the government of Justin Trudeau has put a lot of stock in – policies meant to address such issues as sexual abuse, the settlement of refugees and improving the lot of Indigenous Canadians. “Good policy is impossible without good data,” said Finance Minister Bill Morneau in a 2016 speech. But this government’s trademark policies often don’t have good data behind them.

In an audit of the Canadian Armed Forces released last fall, the auditor-general found that the military had “no centralized system to collect and track incidents of inappropriate sexual behaviour in a systematic way,” despite launching Operation Honour to combat sexual misconduct in its ranks in 2015. An Armed Forces spokesperson told The Globe that the military is now addressing the issue: a sexual-misconduct tracking system was “implemented” this past October and it will be “fully operational” some time in 2019.

Meanwhile, a 2017 study of the government’s efforts to settle Syrian refugees – one of the Trudeau government’s signature initiatives – found that Immigration, Refugees and Citizenship Canada was not gathering numbers on such key measures as the average number of months those refugees spent on income assistance, the effectiveness of the language training they have received, or the percentage of refugee children attending school.

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As the benefits of open government data become more widely accepted, Canada is falling behind many of its peer countries in making use of the stuff. Ireland publishes a comprehensive biennial data set on the well-being of children; Denmark tracks every aspect of gender equality; Britain breaks down many social-welfare indicators by ethnicity; and Australia publishes national workplace-injury rates – none of which can be said of Canada.

But no country throws our data failures into starker relief than does the United States. You might expect our southern neighbours to be data laggards: After all, theirs is a country that tends to prefer small government and emphasize individual rights over the common good.

Instead, Americans are world leaders at gathering and sharing an abundance of national numbers. “The U.S. has awesome data on almost everything,” says Jennifer Winter, director of energy and the environment at the University of Calgary school of public policy.

Some attribute U.S. public-data excellence to the country’s (small-r) republican form of government, which treats government property as the people’s. But it’s not just a question of national DNA. The United States has made strides in recent years as a result of deliberate government policy.

In 2013, then-president Barack Obama signed an executive order making government data open and machine-readable by default – a move which, remarkably, Donald Trump signed into law just this month after being presented with a bipartisan bill giving Congressional approval to the broad strokes of president Obama’s order.

During his tenure, Mr. Obama also hired Silicon Valley whiz D.J. Patil as the country’s chief data scientist. Mr. Patil’s marching orders: to free up more of the information that had been mouldering, unseen and unused, in federal government vaults. He realized, in short, that the country could solve more of its problems if it had more eyeballs trying to identify them. “Through these data sets, you get brilliant insights,” he says. “We’re harnessing the power of the country’s entire knowledge base.”

Embedded in Mr. Obama’s health-care law, meanwhile, was a sunshine list for payments made by drug companies to doctors. The data helped reveal some chastening facts. Among them: The more money the average doctor receives from opioid makers, the likelier she is to prescribe opioids; and even such small gifts as a single meal tend to tilt doctors toward prescribing more expensive brand-name drugs.

That analysis would not be possible in Canada; the numbers aren’t there. (Under its previous Liberal government, Ontario was on the verge of forcing pharma-payment disclosure, but the program has been put on hold by Doug Ford’s Conservatives.)

A disarming number of people who have spent time thinking about the problem come to the same conclusion about why this is: Yes, federalism creates data silos, and yes, Statscan is too risk-averse and cash poor, and yes, provinces and federal departments have a built-in incentive to keep their failures hidden with data blackouts. But maybe, just maybe, the problem has even deeper cultural roots. Maybe we’re just not curious enough about what goes on within our borders – blissful in our ignorance. Maybe, these people suggest, the problem comes down to Canadian complacency.

Tellingly, Canada’s Copyright Act, signed in 1921, gave the Crown the rights, for a full 50 years, to any work produced by any government department – a stark contrast with our southern neighbour, which banned government copyright in the 19th century. “The U.S., in its early history, made legislation that said, ‘We shall make this information available to the people,’ ” says Mark Leggott, executive director of Research Data Canada, a non-profit that helps researchers use public data. “In Canada, we made it so that the information was the property of the Queen.”

It doesn’t have to be this way. The Liberals’ 2015 election platform promised to “embrace open data” and stated that a Liberal government would “make government data available digitally, so that Canadians can easily access and use it.”

And, to be fair, the Trudeau government has certainly made some progress over the past three years. Most famously, it reinstated the mandatory long-form census, which Stephen Harper’s Conservatives had axed in 2010.

A spokesperson for Jane Philpott, the minister of digital government, a portfolio recently created and tacked on to the Treasury Board, also noted that 81,909 data sets are available through the federal open-government portal (though many of those were published by previous governments). Anyone can now open their laptop and look up everything from Canada’s sulphur-oxide emissions, over time, to the country’s “spatial density of oats cultivation.”

Like the governments of every industrialized country, Canada posts far more data online than anyone would have thought possible 30 years ago. It actually tied for first with Britain in a recent “open-data barometer” created by the World Wide Web Foundation (though it’s worth noting that the ranking awards points for fairly basic achievements, like publishing government budgets and election results, and that Canada scored poorly on national environmental statistics).

Statistics Canada would like you to know that it is making progress, too. Anil Arora, the agency’s chief statistician, points to new technologies and techniques that are changing the way it collects public data. Last year, for instance, the agency crowdsourced black-market cannabis prices by asking the public to use an app called StatsCannabis. More than 20,000 people responded. Statscan is also experimenting with “virtual data research centres” that will make microdata more easily accessible by computer, although their inauguration is likely years away.

Notwithstanding the backlash to Statscan’s banking-information scheme – and anxiety in some quarters about giving government more power to gather the personal information of citizens – the public has also shown signs of embracing the value of government data in recent years. The cancellation of the 2011 mandatory long-form census had the unexpected consequence of raising the census’s profile, and maybe even its popularity. The 2016 response rate was the highest ever, at 98.4 per cent, suggesting that Canadians see taking part in data collection as their civic duty, provided their confidentiality is protected and they feel it’s for the public good.

To be sure, a problem as vast and diffuse as a country’s ignorance about itself can hardly be laid neatly at one government’s door, much less one ministry’s. Still, given the Liberals’ enthusiasm for evidence and openness, their reluctance to frankly admit that Canada has a data deficit and to propose concrete solutions is notable.

When asked to comment for this story, the Prime Minister’s Office deferred to the minister of digital government, whose spokesperson’s answers focused on the government’s achievements, especially relative to the Harper Conservatives, and who spoke in general terms about plans for more data openness in the future. For example, in response to a question about the dozens of data gaps identified by The Globe, the spokesperson replied, “We have reinstated the long-form census, unmuzzled government scientists, and made ministerial mandate letters public while tracking progress on those commitments to Canadians. We know there is always more work to do.”

The leaders of Statscan were also reluctant to take ownership of Canada’s data-gap problem. In an interview last year, Mr. Arora pointed a finger at academic researchers who are unable to ferret out the numbers they need. “I would argue that there’s still a lot of data that we have that either researchers don’t even know about or underutilize,” he said. “They find the vetting steps, the confidentiality component, to be a little too much for them.”

In the meantime, Canadian public data remains full of lapses, hesitations and holes – for things as basic as average wait times for mental-health services and the number of homeless people who die on our streets. And the data we have is often so hard to access, it might as well be hidden. Even Mr. Arora knows the dangers of asking the country to fly blind this way: “There could come a day when the population says, ‘You had access to all of these data stores and you could have reasonably used it to prevent something nasty from happening. Why didn’t you?’ ”

Mr. Arora posed his question as a hypothetical – but didn’t need to. Every day, Canadian governments have the chance to prevent nasty things from happening, by putting stark numbers in front of Canadians, so that the public can demand change where it’s needed and build on what the country is doing right. And every day, governments pass up the opportunity to do so. On maternal health, on Indigenous education, on environmental action, on the safety of drugs and the integrity of the doctors who prescribe them, on matters as seemingly mundane as how far Canadians drive and as patently urgent as the rate at which whole demographic groups are dying, governments deprive Canadians of the data needed to make good decisions. Every day, they leave Canadians in the dark.

Source: The cost of Canada’s data deficit When it comes to basic data about its own citizens – from divorce rates to driving patterns to labour trends – Canada simply doesn’t have the answers. If information is power, this country has a big problem.