Why Ontario needs to collect race-based health data

2023/03/24 Leave a comment

While written from the perspective of Black Canadians, applies to all visible minority groups:

Statistics Canada has published mortality data for the Black population for the first time. The findings highlight the urgent need for systematic collection, analysis and use of race based data if we are going to deliver equitable health care.

Statistics Canada merged census data and death certification and reported that Black people in Canada are more likely than white people to die from HIV/AIDS, diabetes, hypertension, stroke, kidney disease, endocrine disorders and prostate, stomach and uterine cancers. 

Black men and women are five and 22 times, respectively, more likely to die from HIV/AIDS than the white population. But there was also a 10 to 70 per cent increased death rate for the Black populations compared to the white populations for other illnesses. 

For Black men, the risks of prostate cancer death were increased 30 per cent, diabetes 35 per cent and cerebrovascular disease 10 per cent. For women, there were increased risks for dying from stomach cancer (76 per cent), uterine cancer (78 per cent), and diabetes mellitus (48 per cent). 

Socio-economic factors are part of the reason for differences in death rates. But even when these are taken into account, significant disparities persist. 

Our health-care system lacks the foresight to identify those who need the most help and building services that meet their needs. We are currently witnessing efforts to move on from COVID-19, though infections persist; we have a health-worker shortage that will exacerbate problems of access to care, and this could all be made worse by a focus on privatization.

These crises affect us all. But, some will be more impacted than others and we have no way of knowing the true extent of the harm because we do not routinely collect sociodemographic data in the health system.

As of Jan. 1, all Ontario school boards were required to collect race-based data. Our health-care system should commit to the same as there is evidence that collecting race-based data is an effective tool for improving health.

A 2019 study found that Black women were under-screened for cervical cancer, which increased their risk of worse outcomes. To address this, TAIBU Community Health Centre developed a highly effective Afrocentric cancer screening program. The rates of breast, colorectal, and cervical cancer screening increased from 17 per cent to 72 per cent, 18 per cent to 67 per cent, and 59 per cent to 70 per cent, respectively. 

Without the data from research on racial health disparities, the health concerns and needs of Black communities would have been ignored.

The Black population was at higher risk of getting COVID-19 during the first year of the pandemic. One third of employed Black women worked in health or social assistance jobs compared to 22 per cent of nonvisible minorities and because the Black population has the second highest poverty rates in Canada they were more likely to be using public transit and living in crowded housing.

Because Ontario public health units collected race-based data during contact tracing in the early pandemic, health officials were able to identify that Black populations had higher rates of infection. They used this information to develop community-based strategies to decrease infection, hospitalization and death.

Sadly, Ontario public health units no longer collect race-based data systematically. Contact tracing stopped as COVID-19 rates rose and no other system of race based data was put in its place. Further, Ontario did not mandate vaccination sociodemographic data collection.

Data collection by public health across Ontario was possible when the harms of anti-Black racism were on full display in 2020, and political will and public attention spotlighted community concerns. But this was short-lived, focused only on COVID -19 infection and ended mid 2021.

Without the collection, utilization and proper governance of race-based data, our disproportionate pain and deaths go unacknowledged, unaddressed and invisible.

We cannot afford to wait for another racial justice reckoning to reach popular discourse for change to happen.

Fiqir Worku, Paul Bailey and Kwame McKenzie are members of the Black Health Equity Working Group.

Source: Why Ontario needs to collect race-based health data

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Wolfson and Castle: Ottawa’s new health funding is tied to better data. What will that really mean?

2023/02/14 Leave a comment

Good data discussion on outputs vs outcome measures, with the latter harder to measure but more important:

The federal government has just offered the provinces and territories substantial new funding to address the obvious failings in Canada’s health care sector. They have also rightly coupled reform with major improvements in health data collection, including the need for new and better indicators to measure progress. As Prime Minister Justin Trudeau has repeatedly said, “What gets measured gets done.”

But as with all data, the devil is in the details.

What exactly are health outcomes? Are they the same as health indicators? How will they be measured, and how can we ensure they are reported meaningfully and transparently for all Canadians? And most importantly: Will new health data meaningfully improve health care for Canadians?

In health care, for example, indicators can include the percentages of Canadians who have access to a family care team and the number of new family care practitioners; in fact, these are two of the indicators specified by the federal government. But while these are valuable, neither measures a health outcome. Instead, these indicators provide information on volume and accessibility for a key input in health care, namely primary care.

To the extent that these indicators can provide more detail – for example, by ethnicity or socioeconomic status, which should be essential lenses – they can shed light on important issues of equity and timeliness of health care. And as these indicators are tracked over time, they can provide a partial picture of whether health care is improving.

But health-outcome measures go beyond indicators, and require more detailed kinds of data.

A health outcome needs to consider a patient’s health status both before and after an intervention, such as a knee replacement or cataract surgery. It’s not just the waiting lists that matter; we also need to know how often a knee replacement has to be redone within a short period of time, or how frequently a cataract surgery fails to improve vision as much as anticipated.

Regularly measuring these kinds of health outcomes is fundamental to learning how well different parts of health care are performing, and whether we are receiving quality health care in the most cost-effective manner.

So how does this understanding of outcomes align with the federal government’s proposed “indicators” and data initiatives requirement? Short answer: we don’t know.

Provinces and territories have control over what health care data are routinely collected. For example, if we really want to know about health outcomes related to primary care, we first need to understand the various ways primary care is currently delivered – whether by solo fee-for-service doctors, or by teams, which include nurse practitioners as well as physicians who are remunerated by capitation, or some other model.

There is enough variety in primary care delivery across Canada that it should be possible to learn what works best by careful and probing comparisons across and within jurisdictions.

We then need to follow samples of individuals over time, to track which mode of primary care organization has patients with fewer illnesses, fewer hospitalizations and longer lives.

It is only with these kinds of longitudinal, person-level data that we’ll be able to produce evidence on which we can base valid indicators of health outcomes, and connect them to jurisdictions’ current and evolving ways of providing primary care to their residents.

Will the provinces collaborate, agree on standardized definitions and, with federal financial support, make the investments needed so these critical data become available? The federal government’s wording on this is ambiguous: “To access their share of the federal funding, including the guaranteed 5 per cent growth top-up payments to the CHT, for the next five years, provincial and territorial governments are asked to commit to improve how health information is collected, shared, used and reported to Canadians to promote greater transparency on results.”

Is this general statement merely cajoling, or is the federal government actually waving a serious fiscal stick? That will ultimately dictate the data outcome, because past decades of federal initiatives have repeatedly shown that if Ottawa fails to wield meaningful fiscal penalties, the momentum on serious health care reform is bound to face disappointment.

Michael Wolfson is a former assistant chief statistician at Statistics Canada and an adjunct professor in the faculties of medicine and law at the University of Ottawa. David Castle is professor of public administration at the University of Victoria. They both served on the Expert Advisory Group of the Pan-Canadian Health Data Strategy convened by the Public Health Agency of Canada.

Source: Ottawa’s new health funding is tied to better data. What will that really mean?

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Canadians’ health data are in a shambles

2021/12/10 2 Comments

Unfortunately, all too true, with too few exceptions, based upon my admittedly anecdotal experience in Ottawa:

Canadians see new and increasingly powerful computerization in almost every facet of their day-to-day lives – everywhere, that is, except for something as fundamental as our health care, where systems are too often stuck in the past.

When we go to the doctor, we get prescriptions printed on paper; lab results are sent via fax; and typically, medical offices have no direct links to any patient hospitalization data. And while the pandemic sparked a mad scramble to set up many new data systems – to track who was infected, where there were ventilators, who has been vaccinated and with which vaccine – this has happened in a largely unco-ordinated way, with Ottawa and provincial governments each developing systems separately.

As a result, even these newest computer systems are duplicative, and they do not communicate across provincial boundaries, or even within some provinces – not even, for example, to connect vaccinations, infections, the genotype of the virus, hospitalizations, other diseases and deaths so they are centrally accessible. And so Canada’s recent health-data efforts have wasted millions of dollars while failing to provide the evidence base needed for real-time effective responses to the fluctuating waves of COVID-19 infections..

This kind of failure is not new. Even before the pandemic, key kinds of data have long been imprisoned by data custodians who are excessively fearful of privacy breaches, even though the data are generally collected and stored in secure computer databases. A broad range of critical health care data remains unavailable – not only for patients’ direct clinical care, research and quality control, but also for tracking adverse drug reactions, showing unnecessary diagnostic imaging and drug over-prescribing. The result is that major inefficiencies in the systems remain hidden – and may actually cause health problems, and even deaths by medical misadventure.

There are many directions one could point the finger of blame, but as a new report from the Expert Advisory Committee to the Public Health Agency of Canada found, the root cause is a failure of governance. Federal and provincial governments have failed to agree on strong enforcement of common data standards and interoperability, though this is not only a problem of federalism. Health-data governance problems are also evident within provinces where one health agency’s data system is not connected to others within the same province.

What Canada and the provinces have now is essentially provider-centric health-data systems – not just one but many kinds for hospitals, others for primary care, and yet others still for public health. What Canadians want and need is patient- or person-centric health data. That way, no matter where you are in the country, your allergies, chronic diseases and prescriptions can be known instantly by care providers.

Private vendor-centric health-data software also pose a threat, as do data collected by powerful tech companies from new wearable technologies that offer to collect your health data for you. If Canada does not act swiftly and decisively to establish the needed governance, competing vendor software and individual data will continue the rapidly growing cacophony of proprietary standards. This trend is raising new concerns about privacy, along with untracked increases in health care costs.

The fundamental importance of standardized, interoperable, securely protected health data has been known for decades. There have been repeated efforts to achieve a modern effective health-data system for Canada. But federal cajoling and even financial incentives have failed. Much stronger governance mechanisms are required, and urgently, as the global pandemic has revealed.

The federal government has the constitutional authority to play a much stronger role, given its powers in spending, public health, statistics, as well as “peace, order and good government.” It also has readily available regulatory powers under the Canada Health Act.

Of course, high-quality data collection and data software have costs. But given the tens of billions of health care dollars the federal government is providing to the provinces through fiscal transfers, it is long past time they leveraged this clout – using both carrots and sticks – so Canadians can finally have informed, accessible health data when and where they need it most.

Michael Wolfson is a former assistant chief statistician at Statistics Canada, and a current member of the University of Ottawa’s Centre for Health Law, Policy and Ethics. Bartha Maria Knoppers is a professor, the Canada Research Chair in Law and Medicine, and director of the Centre of Genomics and Policy at McGill University’s Faculty of Medicine. They are both members of the Expert Advisory Group for the Pan-Canadian Health Data Strategy.

Source: https://www.theglobeandmail.com/opinion/article-canadians-health-data-are-in-a-shambles/

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Ottawa, provinces must create agency to reform how health data is collected and used, report says

2021/12/01 Leave a comment

East to agree, hard to implement given provincial agreement needed. Even integration within a province is far from being implemented in a comprehensive manner:

The federal and provincial governments must create a national agency to set standards for the collection and sharing of health data to respond more quickly to threats such as pandemics and to improve patient care, a new report says.

The report, from a federal advisory group to be released on Tuesday, says governments across the country also need to change privacy laws to allow health records and data to be more easily shared – with patients, medical providers and public-health officials. That would require a significant culture shift away from a system that focuses solely on keeping data secure and private, and toward one that ensures health records and data can be used and shared safely.

The report says the systems across the country that aren’t standardized and can’t talk to each other have limited Canada’s ability to respond to COVID-19, including managing vaccines and tracking variants. More broadly, that reality is also hurting patient care, and could hamper the response to other health crises, the report says.

“We haven’t had this concept that people holding this data should be promoting its appropriate use, its timely use for the benefit of the individuals or for the entire population of Canada,” Vivek Goel, a public-health expert who chaired the review and is also president of the University of Waterloo, said in an interview.

The report is the second of three from the Pan-Canadian Health Data Strategy Expert Advisory Group, which the federal government launched last year to examine data problems exposed by COVID-19. While the group’s work was spurred by the pandemic, its recommendations are far broader, and call for dramatic changes to how Canadians’ health data are stored and managed.

The report says the systems for managing health records, and the privacy laws that oversee them, were designed and created for paper records and haven’t sufficiently been updated for a primarily digital system.

Most people can’t access their own health records, which also aren’t readily available to health care providers as patients move through the system, the report says. The document calls for a “person-centric approach” that would give patients control of their records and allow all of their health care providers to access them easily and securely.

“An integrated, person-centric health data structure ensures that all health data follows an individual through the course of their life-long care,” the report says.

It adds that creating a national system would require governments to agree on standards to ensure those records can be accessed regardless of where a patient is or which doctor they see.

While the report does not make detailed recommendations about managing such a system, Dr. Goel said it should be overseen by a body controlled by Ottawa, the provinces and the territories that would recognize – and address – the reality that health care falls under provincial and territorial jurisdiction.

“We need an entity that is co-owned, co-managed, co-supervised by the federal, provincial and territorial governments together in setting those standards,” he said.

It would also require changes to privacy laws. The report says current privacy laws turn health care providers into “custodians” of data, which, in turn, creates a “privacy chill” that prompts them to restrict access even if not required. Instead, the report proposes a model of “data stewardship” that “champions data sharing, access, use and protection.”

Dr. Goel said a system that standardizes health data and facilitates sharing with officials and experts in other jurisdictions would help governments identify and track public-health threats such as infectious diseases including COVID-19. He said the pandemic revealed how ill-equipped federal, provincial and local health agencies were to gather and share data.

For example, he said as new variants of COVID-19 emerge, such as the Omicron variant that is dominating headlines, it is crucial to track who is getting sick and how transmission and patient outcomes are affected.

To do that effectively, health officials need access to information not just from their own provincial or local health unit, but the entire country. That doesn’t require the same system for everyone, just systems designed to communicate.

He compared it to the Interac network, which allows transactions to be tracked between banks even if they are all using different systems. “There are models that we can learn from the private sector.”

Dr. Goel said governments would need the public’s buy-in to increase data sharing in this way, but he thinks they can be persuaded. He says patients may actually be surprised to learn how little information is shared for wider public-health surveillance, such as the details they provide to COVID-19 contact tracers.

Ewan Affleck, a doctor and an expert in health informatics who sits on the advisory group, said he routinely runs into problems accessing his patients’ records from other providers or jurisdictions.

He treats patients in the Northwest Territories, which sends many people to Alberta for surgery and other procedures, but he often can’t access their information easily – or at all.

“I have no means of getting it because of jurisdictional legislation laws, privacy concerns, and this impairs my capacity to provide care,” Dr. Affleck said in an interview.

“So we make mistakes, and those mistakes damage Canadians. This is happening all the time.”

Dr. Affleck said the same issues hamper Canada’s ability to track and respond to population-level health issues such as pandemics.

“Whether it is guiding our response to COVID or whether we’re treating a patient for a urinary tract infection, this is all based on our adjudication of information,” he said.

“Digital health in Canada is legislated to fail. We have to change that model, because it’s an antiquated model from the age of paper-based information, which worked well then, but it works terribly now. And it is actually damaging Canadians.”

Source: https://www.theglobeandmail.com/canada/article-ottawa-provinces-must-create-agency-to-reform-how-health-data-is/

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@Justin_Ling: Canada’s public health data meltdown

2021/04/09 Leave a comment

Good long read, highlighting ongoing policy failure at both federal and provincial levels:

For weeks, Canadians have been casting their envious eyes to Israel, where more than half the country has been inoculated against COVID-19. Israel, less than a quarter the size of Canada, has administered nearly twice as many doses of the COVID-19 vaccine.

The Middle Eastern country has some innate advantages: It is small and centralized, and offered top dollar to ensure vaccines from Pfizer and Moderna would come fast, and in large volumes. But geography and money aren’t the reason why Israel is outpacing Canada by 10-to-one.

Israel has the vaccines because it has the data.

In its shrewd deal with Pfizer, Israel offered to turn the country into one giant clinical trial: Providing the vaccine manufacturer unprecedented large-scale visibility as to the vaccine’s efficacy. It’s all made possible because of the country’s state-of-the-art information technology and robust national vaccination database.

The rest of the world is currently benefiting from that incredibly granular information.

Canada could never have struck such a deal. Its health technology is, charitably, a decade out of date. It lacks the ability to adequately track infectious disease outbreaks, efficiently manage vaccine supply chains and storage, quickly administer doses, and monitor immunity and adverse reactions on a national basis.

Even though all the shipments of vaccines arriving in Canada come with scannable barcodes, to make tracking and logistics easier—with some manufacturers even barcoding the vials themselves—no Canadian province can scan them. In many provinces, pharmacies can’t access the provincial vaccine registry. Provinces do not automatically submit reports on COVID-19 cases or vaccines into the federal system, and must submit reports manually. Many crucial reports are still submitted by fax: Where fax has recently been phased out, they have been replaced by emailed PDFs.

Ours is a dumb system of pen-and-paper and Excel spreadsheets, in a world quickly heading towards smart systems of big data analytics, machine learning and blockchain. It’s unclear how Ottawa will be able to issue vaccine passports, even if it wants to.

At the core of the omnishambles is a simple fact that Canada has no national public health information system, but 13 different regional ones. Many of those regional systems have smaller, disconnected, systems within: Like a Russian nesting doll of antiquated technology.

But there’s good news: It doesn’t have to be this way. In some parts of the country, real progress is being made. Small technology start-ups are figuring out cheap, scalable and innovative solutions. In some provinces, progress can be as simple as updating operating systems.

If we are ever going to build efficient, cost-effective, and effective health infrastructure, Ottawa needs to take the lead. We need to abandon the idea that federalism requires us to have each sub-national government run entirely independent, walled-off, health databases.

We need data sharing. We need shared infrastructure. We need a national public health system.

***

For decades, Canada has been building out computer systems designed to track infectious disease outbreaks and vaccination campaigns. In non-pandemic times, that means monitoring the spread of sexually transmitted infections, keeping track of supplies of vaccines for things like influenza and mumps, and keeping an eye out for novel outbreaks of infectious diseases.

Most of the country relies on a public health system called Panorama, but not everywhere: Alberta, P.E.I., Newfoundland and Labrador, Vancouver Coastal Health, and the Public Health Agency of Canada itself all use other systems.

The provinces and territories that do have Panorama use it to varying degrees. From one province to the next, the heath infrastructure has different names, different features, unique customizations and varying capabilities.

This was never the plan. Canada, in fact, was once a world leader in digitizing its public health infrastructure.

In 1996, at a national conference of health officials, it was decided that “an immunization tracking system is urgently needed in Canada.” It included a list of goals: To identify children in need of vaccination, to book appointments, to do population-level analysis of immunity to diseases, and so on.

In 2002, basic national standards were drafted: “The time has arrived for a national program to be administered provincially, thus ensuring compatibility between provinces so that this health care information can be accessed when needed.”

When SARS hit Canada in 2003, before any of this technology could actually be implemented, health authorities found themselves woefully unprepared. The federal government and province of Ontario tried to manage the epidemic relying on “an archaic DOS platform used in the late 80s that could not be adapted for SARS,” per an Ottawa-commissioned report.

The country had only gotten a taste of what a deadly and hard-to-control infectious disease outbreak looked like. And it wasn’t ready. It only underscored just how crucial this national database was. The solution to that was Panorama.

It wasn’t cheap. Paul Martin’s government committed $100 million in its 2004 budget to seed the creation of Panorama, through the not-for-profit, government-funded Canada Health Infoway. His government also created the Public Health Agency of Canada to ensure there was central preparedness for the next SARS.

“With this budget, we begin to provide the resources for a new Canada Public Health Agency, to be able to spot outbreaks earlier and mobilize emergency resources to control them sooner,” then-finance minister Ralph Goodale said in his budget speech. He promised “a national real-time public surveillance system.”

The subsequent Harper government, seemingly recognizing the wisdom of what his predecessor had started, provided another $35 million more to fund the work. The contract to build this national surveillance system would ultimately go to IBM Canada.

In 2007, Canadian health officials flew to a conference in Florida to tell their American colleagues how far ahead we were on this health technology.

“By 2009 there will be a national surveillance system that will include a network of immunization registries,” their powerpoint presentation said. They broke down how it would work: A vaccinator would enter a patient’s information, scan the barcode on the side of the vaccine vial, and it would all go straight into the provincial database and, later, the federal system. A computer system could manage an outbreak from infection to immunity.

Dr. Robert Van Exan, who ran health and science policy at Canadian vaccine giant Sanofi-Pasteur, was tapped by Ottawa to figure out how to effectively barcode vaccines in the early 2000s.

“Technically, it’s a huge challenge,” Van Exan told me when I interviewed him in March for the Globe and Mail. “At least, it was.”

At the manufacturer, vaccines moved along a conveyor belt at a rate of about 300 to 1,000 vials per minute, he explained—adding new labelling was a logistical nightmare. But, within a few years, he had corralled the technological know-how to get it working. He went back to the federal government, excited that he and his company were part of this digital revolution.

“Canada was ahead on this by a decade,” Van Exan told me.

But through the late 2000s and early 2010s, that plan seemed to fall further away. There were delays and cost overruns, which largely fell to the provinces and territories. In 2015, British Columbia’s auditor general reported that the province had budgeted less than $40 million to build and maintain Panorama. The cost wouldn’t just double: It nearly tripled. The B.C. government alone would pay more than $110 million, not including ongoing annual costs.

As the program struggled, the Public Health Agency of Canada—the body specifically created following SARS to help build a national public health strategy—pulled out of Panorama. It let the provinces and territories fend for themselves. Nobody was left to actually enforce those brilliant minimum standards from years earlier. It stopped being a cross-compatible national system, administered provincially, and became a smattering of incompatible systems with no real national buy-in at all.

Provinces like Alberta bailed on Panorama in frustration.

The provinces and territories that stuck with it wound up with an inferior product. Beyond just the increased costs, the devastating report from the B.C. auditor general found that core components were just missing. Online vaccine appointments? Vaccine barcoding? Offline usage? Federal integration? All those features were promised, but “not delivered.”

“The system cannot be used to manage inter-provincial outbreaks, the main reason for which the system was built,” reads one particularly galling passage.

Other features didn’t work, or had severe limitations.

Van Exan recalls how “fed up” the vaccine industry was with Ottawa. “They went through this trouble to put the label on the vials,” he said. And for what?

“Despite a substantial federal investment,” one peer-reviewed study pointed out in 2013, “Canada continues to lag behind other countries in the adoption of public health electronic health information systems.” A 2015 study found that multiple provinces failed to even meet the minimum standards set out in 2002—standards that were already becoming stale and anachronistic.

Those 2002 national standards haven’t been updated since. (Health Canada told Maclean’s that the most recent standards were issued in 2020, although the document it pointed to clearly labels them as recommendations for new standards.)

Whether the standards are from 2002 or 2020 is somewhat immaterial. Ottawa doesn’t even know to what degree the provinces follow the standards.

The standards clearly call for Canada to have “reliable digital access and exchange of electronic immunization information across all health providers with other jurisdictions (including federal).”

In response to a question submitted in the House of Commons, Health Canada wrote last summer that “it is not possible for the federal government to know the details of any of the configurations of the provincial/territorial instances of Panorama in order to judge whether it meets a particular standard.” The Public Health Agency has not performed an audit of Panorama, the government added.

There are lots of reasons for the boondoggle. Many provinces and territories had competing priorities for what their health infrastructure ought to look like, and many balked at the idea of sharing data with Ottawa or even their neighbouring governments. “The provinces chose to do things independently,” said one source with knowledge of the system, who spoke on the condition of anonymity. Some provinces tried to make Panorama “too many things to too many people,” they said, and ended up with a system that disappointed everyone. That’s a common problem in Canadian technology procurement.

Part of the issue was the technology itself. Canada tried to stand up an ambitious IT infrastructure at a time when things like cloud hosting and barcoding capabilities were still expensive, clunky and hard to do on a large scale. But the core problem was a total lack of leadership. Ottawa pioneered the idea for a national registry, then walked away when things got hard.

Ontario family doctor Iris Gorfinkle has been calling for this national strategy for years. Last year, before we even saw our first vaccine, she warned in the Canadian Medical Association Journal that “it is imperative that we have the ability to provide potentially limited vaccines to those jurisdictions with higher disease rates to optimize vaccine distribution and coverage.”

I asked her why we haven’t been able to do this. She answered in a word:

“Inertia.”

***

In the last decade, provinces have had to make do. Alberta has modernized the legacy system it reverted to when Panorama went sideways. Ontario has tried valiantly to customize and upgrade Panorama until it resembled the system the province ordered.

Over time, however, Panorama did improve. By about 2017, IBM was finally adding those features that had been left off. It built out new data dashboards, integrated barcode scanning, and added APIs to make Panorama compatible with other systems. Most critically, Panorama went from a clunky program that could only run on designated computers to a cloud-based program that could be accessed by any laptop, tablet or phone.

Indigenous Services Canada, which administers some health services to First Nation communities, actually won an eHealth award in 2014 for its implementation of Panorama. One B.C. public health official lauded the agency’s work, saying it would allow health professionals “to better detect early signs of outbreaks by enabling sharing vital information between different public health related services providers.”

Some provinces, like Nova Scotia, upgraded Panorama into the new, more functional version. “One of the great things about Panorama in terms of helping in an outbreak is just having more timely access to information,” a prescient Nova Scotia provincial health official told CBC in 2019.

But it hasn’t been uniform: Ontario’s heavily customized system is running an old version of Panorama. Saskatchewan still hasn’t implemented core Panorama modules, like the one that tracks adverse reaction reports.

One source said provinces could enable its system to scan barcodes and health cards with a flip of a switch—several provinces, the source said, actually refused, insisting manual entry was more efficient.

Meanwhile, provinces and territories are still relying on manual data entry and spreadsheets to track inventory and shipments. Some jurisdictions are logging immunizations with pen and paper. A citizen can’t readily carry their immunization record from the Northwest Territories to Yukon.

Pharmacists in Ontario need to enter every immunization into two systems: once, into their own record management program; and again, into Ontario’s newly fashioned COVaxON, a front-end interface that is supposed to feed into Ontario’s outdated version of Panorama.

The inefficiencies are glaring. But it gets worse.

Notwithstanding inefficiencies and outmoded technology on the local level, the whole point of the Public Health Agency of Canada is to be able to track infectious disease outbreaks across the country. Right now, this is top of mind, as we wait to see the countervailing impacts of the COVID-19 variants and vaccines. A good system should be able to show us how different variants are spreading, and whether any or all of the vaccines are effective against which strains. But that only works if PHAC has the data.

Ottawa technically has information-sharing agreements with the provinces, but a government response to a question filed by Tory MP Scott Reid exposes how archaic the infrastructure truly is. Ottawa “does not have automatic access to data held in [provincial and territorial] systems, including Panorama,” the government wrote. “In the early weeks of the outbreak, some provinces were sending case information to PHAC via paper.” For the first four months of the pandemic, Ottawa wasn’t even collecting basic data on COVID-19 cases, like ethnicity, dwelling type, or occupation. Things have improved somewhat: Provinces now submit their reports manually, via a web portal.

The Public Health Agency of Canada reported that its “emergency surveillance team receives electronic files in .csv format from provinces and territories.”

A March report of the federal auditor general found that “although received electronically from provincial and territorial partners in the majority of cases, health data files were manually copied and pasted from the data intake system into the agency’s processing environment.” The audit also reports that many aspects of Ottawa’s data sharing agreements with the provinces and territories are not yet finalized. The audit further found that crucial information about COVID-19 cases—such as hospitalizations and onset of symptoms—was often not being reported to Ottawa.

The auditors came to a similar conclusion to many experts, like Gorfinkle and Van Exan: “We found that for more than 10 years prior to the COVID‑19 pandemic, the agency had identified gaps in its existing infrastructure but had not implemented solutions to improve it.”

When it comes to any vaccine, there are reports of adverse reactions—while they are rare, the recent panic over the AstraZeneca vaccine and blood clots shows this tracking is absolutely crucial. When a Canadian reports an adverse reaction to any vaccine, the province must pass it onto PHAC—which must, in turn, send it to the World Health Organization. Until very recently, Ottawa required that provinces and territories submit those reports via fax. More recently, it has modernized: “provinces and territories submit data [on adverse reactions] in a variety of formats, including line list submissions and PDF submissions,” the government said. That still means the reports must be entered manually. Some provinces only submit their reports weekly.

Panorama, meanwhile, has an adverse reaction tracking and reporting feature. PHAC just hasn’t been using it.

PHAC insists it has “well-developed surveillance and coverage information technology” and it responded to the auditor general with further more promises to address the gaps it has been vowing to fix for a decade. It’s hard to know if that progress is real or not.

In November—already some eight months into the pandemic—the federal government sent a secret request for proposals to a shortlist of pre-qualified suppliers looking for a “mission-critical system” to manage vaccine supply chains, inventory, and to ”track national immunization coverage.” The $17-million contract went to Deloitte, and it is supposed to plug into the disparate provincial systems to provide some semblance of a national picture. But Ottawa is refusing to disclose any timelines, details of the project or really anything beyond some boilerplate talking points. We only know about the project because the request for proposals was leaked to me in December. (“It’s awe-inspiring that they would withhold that information,” Gorfinkle says. I agree.)

So long as we commit to this madly off in all directions strategy, Ottawa can’t build a functional national system. Federal agencies can’t coordinate, much less individual provinces and territories. The patchwork makes national visibility impossible. Worse than a garbage-in, garbage-out problem—provinces can’t even agree on how to format the garbage. The result has been error and inefficiency.

One Ontario woman was hospitalized after receiving three doses of a COVID-19 vaccine, two of them just days apart—something that would never happen if she had an accessible, up-to-date vaccination record.

Meanwhile, seniors have been forced to stand in line for hours in Toronto, as health staff waste time doing work that could be easily automated. Epidemiologist Tara Gomes tweeted that her mother “had to repeat her address so many times to the person at check-in that she finally asked for a pen and paper and wrote it down.” It gets more frustrating when you realize, as Gomes noted, that her mother had to provide her personal information to get the appointment—the province’s COVaxON booking portal doesn’t connect to the COVaxON vaccine registry.

“You can’t blame one government,” Van Exan says. Every level of government of every political stripe has let this Frankenstein’s monster of a digital health system continue to limp along.

”Including the current one.”

***

The barriers to improvement are lower than you might think.

There is no particular reason why Vancouver ought to be using different vaccine management software than Victoria, or why Toronto should be running a different version of Panorama than Halifax. The diseases these health authorities face are the same, as are the vaccines dispatched to combat them.

Ottawa seems, a year after the start of this wretched pandemic, to be coming around to that idea. The Public Health Agency of Canada told Maclean’s it will finally be adopting Panorama, which “will enable more automated and timely data sharing and reporting.” At the end of March, it wrote that the new system “is expected to be online in the coming weeks.” Deloitte, IBM and the Government of Canada have been working together to get Panorama working with the Public Health Agency’s existing systems.

But just adopting Panorama isn’t nearly enough.

Step one is deciding if we really want a national system. If the provinces and territories are truly, completely incapable of running a system to national standards—or Ottawa is incapable of managing those standards—then maybe we should actually commit to decentralization. Shut down PHAC and download money and responsibility for public health to the provinces.

The benefits of a national system, however, are real and obvious. If we can agree with that principle, then step two is picking a technology and sticking to it.

We shouldn’t be married to sunk costs: If there is a better system out there than Panorama, we should consider it. But actually committing to Panorama is the obvious choice. It is already the standard for most of the country, and there’s no guarantee that starting from scratch will rectify our jurisdictional issues. What’s more: A list of other countries are now relying on Panorama. The more customers, the better.

Sticking with Panorama doesn’t mean that Alberta and Vancouver need to abandon their proprietary systems—but it does mean they need to be speaking the same language.

To that end, step three is standardizing data collection and sharing.

This, of course, needs to be done wisely: Patient data should be anonymized, for security reasons. Any cloud systems must have their servers within Canada (Nova Scotia’s data is available on the cloud, but entirely located in Halifax and Quebec.) And we need to make sure that governments are entirely transparent about how, when and why they use this aggregated health data. But all those jurisdictions need to use the same file formats, collect the same variables, and report them in the same efficient, automatic, manner.

Step four is investing in the infrastructure we need to make all this work—and sharing resources where that makes sense. If health authorities need an app to scan barcodes to track shipments, it doesn’t make sense for every province and territory to be using a different app. If we need to buy barcode scanners, every province should be buying the same one. Where it makes sense to share servers, we should share servers.

Step five is the easiest: Keep things current. It’s hard to think of any other instance where relying on 20-year-old technology standards makes sense. We need to be constantly revising and updating how we handle infectious diseases—the benefits will be apparent, in how we tackle everything from mumps, to HIV, to the next highly infectious disease that reaches our shores.

Again, these things are very doable, and don’t require any government to sacrifice autonomy. And, best yet, it can save us money.

On barcoding alone, a government panel estimated in 2009 that Canada would see $1 billion in savings by saving time, preventing wastage and reducing errors. On virtually every other front: Struggling through antiquated IT, and relying on overworked health staff to make up the difference, is expensive.

Governments don’t have to do it alone, either. Private industry can help.

In Alberta, start-up Okaki devised a simple, scalable system that can manage vaccination campaigns and even scan vaccine barcodes. The company has been running immunization drives for years, mostly in First Nations, and feeds its data directly into the provincial system—it is also compatible with Panorama.

CANImmunize, which began as an app allowing individuals to track their own vaccination record, now does many of the things Canada’s national system was supposed to do—including tracking appointments, monitoring adverse reactions, scanning vaccine barcodes. The technology can be fully integrated with Panorama.

Since I began writing about this issue for the Globe and Mail, my inbox has been inundated with emails from companies insisting that they could fix these problems in no time at all. There is no shortage of qualified people looking to help, and to innovate.

A group of companies, led by IBM, recently won a contract to build Germany’s vaccine passport system. It will use blockchain technology to make citizens’ vaccination records accessible, secure and verifiable. If we don’t get our act together soon, Canadians will be lucky to even get laminated paper vaccination records.

The provinces and territories need to come to the table and do this together. Our self-injurious commitment to federalism at all costs is endangering our own citizens. Because every province plays in their own needlessly walled garden, they are less prepared to deal with epidemics, they are less efficient at administering vaccines, and their citizens are more at risk from getting sick and dying.

Our country is supposed to be one of cooperative federalism, where provinces and territories can pursue creative solutions to unique problems. But when it comes to the basic mechanics of infectious disease outbreaks, there is no central leadership.

COVID-19 does not change shape when it crosses from Manitoba to Nunavut. We need the same set of tools in every province, or else we’re never going to fully beat this virus—and we’re going to be dangerously ill-equipped for the next one.

Source: Canada’s public health data meltdown

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Wolfson: Without good data, we’re flying blind on good health care

2021/03/27 Leave a comment

Hard to disagree:
Yet again, the provinces are wailing about the need for more federal money for health care, with no strings attached. These are the same provinces who have for decades grossly underfunded long-term care. And as we are seeing in real time, many of the provinces are scrambling last minute to have the data to understand and manage the pandemic, most recently in rolling out vaccinations.Of course, the federal government should not cave in to these unwarranted provincial demands. It is entirely within the federal government’s constitutional authority, despite what the provinces are saying, to play all kinds of roles in the health sector. The provinces never object to the billions of dollars the federal government pours into health research every year.

But many of the provinces are still in the dark ages when it comes to collecting and making available for crucial health services research the kinds of data essential to understanding how well health care is being delivered.

Car dealers and airlines have for years had far better computer systems to keep track of the health of your car, and every airplane seat in the world. The Big Tech software companies not only collect humongous volumes of data on many of us, with their real-time technologies; they are continually doing experiments to see what will induce us to click more on their sites and advertisements.

Yet our public health authorities are having difficulties even connecting our COVID-19 tests, our vaccinations, and any hospital visits, as in many cases these software systems are completely separate silos.

So, what’s wrong with the federal government saying to the provinces, if you want more cash, you first have to implement decent real-time data systems? Indeed, the constitution expressly assigns jurisdiction for statistics to the federal government, hence the authority to play a strong leadership role in health data systems in the provinces.

The federal government has to be accountable to us in our role as federal taxpayers, not only as provincial taxpayers. It is incumbent on the federal government to ensure that any monies it transfers to the provinces are used for the purposes intended.

If the transfer is for health care, a province cannot use the cash received to finance tax cuts. If the transfer is to push the provinces to improve the generally awful state of long-term care, then it is entirely reasonable for the federal government to impose requirements on the ways the provinces spend the money, including collecting data and other reporting to ensure that provincial promises are more than rhetoric.

These requirements are more than just reasonable; they are based on the federal government’s constitutional authorities for the spending power, and for peace, order and good government.

At the same tine, the federal government sorely needs to up its game.  For example, the most recent speech from the throne committed the federal government to take the lead in developing national standards for long-term care. But one has to wonder how this can be achieved when there is virtually no nationally comparable data on one of the most crucial aspects of long-term care quality, namely staffing.

The federal government was negotiating the purchase of COVID-19 vaccines many months ago. That should have been more than sufficient lead time to ensure that there would also be a national system in place when the vaccines started arriving to track how the vaccine rollout was progressing.

Yes, it can and should be left up to each province to decide vaccine allocation. But with the current hodge-podge of computer, fax and email systems, there is no way to keep track in real time of what’s being done across the country. There’s also no way to connect vaccinations to rises and falls in outbreaks at the level of detail needed to inform lockdown policy.

Health care and public health are quintessentially knowledge industries. It should be obvious that they should be organizations that learn from experience. But it is impossible to learn from experience if you have no way of knowing just what you are experiencing.

Proper data collection and analysis are essential.

It is long past time that the federal government stiffened its spine and, in addition to saying it will work collaboratively with the provinces, put some muscle into meeting nation-wide concerns.

Michael Wolfson, PhD, is a former assistant chief statistician at Statistics Canada and a member of the Centre for Health Law, Policy and Ethics at the University of Ottawa.

Source: Wolfson: Without good data, we’re flying blind on good health care

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Ontario is starting to collect race-based COVID-19 data. Some worry it could do more harm than good

2020/07/03 Leave a comment

Sigh. Yes, groups should be consulted, yes, the data should be made public, but hard to see that minorities will be worse off with data than without.

Having better data facilitates discussion of current realities and possible policy options to address disparities:

With Ontario’s race-based COVID-19 data collection beginning “imminently,” health experts say crucial unresolved questions will determine whether those efforts help alleviate the pandemic’s brutal disparities, or cause more harm.

Regulatory changes came into effect last Friday that mandate the collection of information on race for all newly reported COVID-19 cases province-wide, along with data on income, household size and languages spoken. Data collection is beginning once training for public health units and changes to data entry systems are complete, according to a health ministry spokesperson.

Community organizations, researchers, doctors and public health experts have called for the collection of this data, pointing to the disproportionate burden of COVID-19 in areas with more racialized, low-income and newly immigrated residents.

But health researchers said the question of how this data is managed and used is even more important than whether it is collected.

“The collection of race-based data is not the outcome,” said Camille Orridge, a senior fellow at the Wellesley Institute and longtime advocate for health equity data collection. “The outcome is to have the information and use the information to reduce disparities. That’s the goal.

“We need to be clear with people who are collecting the data — government, etc. — that there are a number of things that must be answered before we come to the table to give up the data,” she said.

Orridge cited a list of questions, including whether the data will stay in Canada, whether it will be sold in any form to the private sector, how artificial intelligence will be used with the resulting databases. And most importantly, for her: whether the racialized communities most affected will have oversight and input on whether the data is being used to answer questions and create policies that counter the pandemic’s unequal toll.

She cited a phrase often used in the world of Indigenous policy: “Nothing about us, without us.”

Alexandra Hilkene, the health ministry spokesperson, said “We’re currently in the process of finalizing the terms of reference for the working group that will report to the ministry and help ensure we interpret the data accurately. The group will include policy experts from racialized communities.”

In Toronto, some of the neighbourhoods most affected by COVID-19 have case rates 14 times higher than the least affected neighbourhoods. Those hard-hit neighbourhoods are all clustered in the northwest of the city, an area that has been historically underserviced and has higher rates of poverty, inadequate housing, and other symptoms of systemic disadvantage.

The city’s most affected areas also have significantly higher percentages of Black residents than the least-affected areas, and higher percentages of Southeast Asian and other racialized groups. But health experts say these area-based analyses, which rely on matching the postal codes of known cases to census data, are less revealing than collecting the data directly from individuals.

Toronto, Peel Region and some other health units have already begun collecting this data, but officials argued that it should be mandated province-wide to provide a complete picture. After weeks of urging, the province made regulatory changes to the Health Protection and Promotion Act to mandate the collection of race and sociodemographic information for COVID-19.

But now that the government is about to begin collecting that data, it shouldn’t be exclusively available to them, said Arjumand Siddiqi.

“I would worry that if the data stays in the domain of the government, or if they handpick a small group of people to use it and no one else sees it, we have to rely on what those people tell us,” said Siddiqi, Canada Research Chair in population health equity and a professor at the University of Toronto’s Dalla Lana School of Public Health.

Making the data available more broadly ensures that independent researchers can check the work of others, rebut flawed analyses and conclusions, and ask different kinds of questions.

But Orridge said it’s also important to ensure that the researchers who do get access to race-based COVID-19 data have real relationships in and accountability to the communities that are most affected.

“We have researchers who have no connection to the communities having access to the data, and making their careers on the use of that data,” said Orridge.

“We’ve got to make sure that the data, when it’s being used and published, always has a context, so that we don’t further stigmatize communities.”

LLana James, a doctoral candidate at the University of Toronto Faculty of Medicine who researches race-ethnicity, health data, privacy, AI and the law, noted that Ontario and Canada collect health data in a legal framework that has failed to catch up to the massive technological changes that have occurred, especially in the last decade with the rise of machine learning.

“We have one of the lowest thresholds for legal use of data in the developed world,” said James, noting that technology companies see Ontario as an attractive market for lucrative health-care data, and contrasting Canada’s poor data privacy protections with Europe’s robust framework.

James provided critical comments on the province’s proposed regulatory changes to begin collected race-based COVID-19 data, and believes the current, government-driven data efforts will not help Black, Indigenous and other racialized communities.

Race-based data assumes that “we need to know the race of the person, not how racism is functioning. Those are two completely different scientific questions,” James said.

“We have 400 years of data about what happens to Black people during pandemics,” said James. “We have hundreds of years of race-based data, and it’s changed very little. It’s the will to act (that’s missing), not the will to collect more stuff.”

Like Orridge, however, she believes that any data collection that avoids harm must be centred in and directed by communities. James is the co-lead of REDE4BlackLives, a research and data collection protocol that provides a framework for the ethical engagement of Black communities in Canada.

“Black communities, like Indigenous communities, know exactly what they need,” says James. “They know who advocates for them. They know who shows up for them. And they know who to trust, because they see it with their own eyes.”

Source: GTAOntario is starting to collect race-based COVID-19 data. Some worry it could do more harm than good

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Beware of COVID-19 projections based on flawed global comparisons

2020/04/09 Leave a comment

Continuing on the data question, found this to be a good explainer given the variances in how data is collected across jurisdictions:

As the COVID-19 pandemic unfolds, every day we are bombarded with numbers. Never before has the public been exposed to so much statistical information. You have been told that “shelter in place” measures are needed to flatten the curve of infections so that local healthcare systems have the capacity to deal with them. On the other hand, you hear that available statistics will not show if and when the curve of infections is flattening, and that existing projections are unreliable because input data are unsuitable for forecasting. Meanwhile, the issue of data and the pandemic fuels a debate in Canada over the release of federal and provincial forecasts of a COVID-19 death toll.

Should we then lose faith in the numbers altogether? The answer is no, but it is important to understand what statistics are available, what they measure, and which ones we should be looking at as the virus continues to spread around the world. One of the key areas where we need to exercise caution is especially when we compare ourselves with the situation in other countries.

As overwhelming as the flow of daily pandemic statistics might seem, data on COVID-19 around the world come from one source: health facilities’ administrative reporting about the number of positive cases, hospitalizations, intensive therapies, deaths, and recoveries. Most countries including Canada follow the guidelines of the World Health Organization and only test individuals with fever, cough, and/or difficulty breathing. Reported data on COVID-19 thus generally refer to symptomatic individuals who have presented themselves at health facilities and have met the established testing criteria.

One of the main indicators derived from these data is the overall case-fatality rate (CFR), which is the ratio between the total number of COVID-19-related deaths and the total number of confirmed positive cases. The CFR is an important indicator in an emerging pandemic because it measures the severity of the disease (how many infected people die from it). As of March 24, the CFR varied substantially across countries, ranging from 0.4 percent in Germany to 7.7 percent in Italy. In Canada and Quebec, it stands at 1.3 percent and 0.7 percent respectively.

It is well understood that different testing strategies for COVID-19 are responsible for a good part of the observed differences in the overall case-fatality rate across countries. For instance, South Korea, Germanyand Iceland adopted a large-scale testing strategy since the beginning of the outbreak, focusing on individuals in the wider population regardless of whether they were high risk or showing symptoms of COVID-19. Most other countries including Canada are following the recommendations of the World Health Organization to test only for COVID-19 symptomatic individuals.

These different testing strategies have a direct impact on the overall CFR because its value is smaller if asymptomatic individuals are included in the calculation, since the total number of positive cases (the denominator) increases. This is the first reason why the CFR is not immediately comparable across countries and should not be used as a measure of whether certain healthcare systems are dealing better with COVID-19 than others.

The second reason is that different testing strategies across countries also matter for the demographics of confirmed positive cases. As it can be seen in the figure below, because of widespread testing in Iceland, the age distribution of COVID-19 positive cases is much younger than in the Netherlands. This does not mean that younger people in Iceland are not respecting social distancing measures, or that the Netherlands has been more effective than Iceland in identifying infections among vulnerable elderly people. On the contrary, countries like Iceland that have effectively tested for COVID-19 early on have been able to identify and isolate clusters of potential infections before they spread to the more vulnerable segments of the population. By doing so, they have limited the number of COVID-19-related deaths and thus reduced the numerator in the calculation of the overall CFR. This is why the demographics of positive cases needs to be considered in the calculation of the overall case-fatality rate to make appropriate comparisons across countries.

The different demographics of COVID-19 positive cases underscore the importance of comparable data that are disaggregated by the patients’ most basic characteristics, notably age and sex. However, these data are only available for a handful of countries, because national health agencies release mainly aggregate figures on the total number of cases, hospitalizations, deaths and recoveries.

We all want to know how the COVID-19 pandemic will evolve. Considering the deep economic implications of the current worldwide standstill, there is a strong pressure to produce projections of the course of the pandemic and its human toll. Yet our efforts will continue to be misguided if we do not coordinate efforts to improve our understanding of where it is across countries through comparable statistics. This could be easily achieved by tracing the evolution not just of the total number of infections and the overall CFR, but also across age groups and for men and women separately.

National health agencies have been disseminating data and indicators about COVID-19 as they see fit because there is no global coordination about how to do so. The World Health Organization has not fulfilled its mandate to facilitate this coordination. Canada, thanks to its longstanding tradition of excellence in statistical reporting, is ideally placed to fill this gap and lead countries around the world to coordinate their monitoring efforts of the pandemic through comparable statistics. This may be one of the crucial steps to win the war against COVID-19.

Source: Beware of COVID-19 projections based on flawed global comparisons

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

2020/04/09 Leave a comment

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

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