Sharon McCarry
QUOI Media

I have been involved in research for the last 15 years as a parent of a neuro-divergent young man. I believe in science, but my participation has always been more about what I wanted the science to achieve. My hope has been that research would help drive change in our healthcare system and in our communities for our kids with disabilities.

Over the years, I have been asked to participate in dozens of research projects for children with autism. But I became increasingly disappointed. There is a significant amount of money invested in learning about our kids’ brains, but there is too often an imbalance at the heart of research.

While we share intimate knowledge about our experiences as parents and allow our children to be studied, the focus sometimes ends up being more about helping researchers earn PhDs or publish more academic articles. Millions of dollars are being invested in health research by governments and donors in Canada every year, but the findings too often do not have a meaningful impact on the communities they are studying.

The good news is that it doesn’t have to be this way. There is a “patient partner” movement working hard to make academic research more meaningful to those with lived experience. But it’s time for this movement to mature.

The Canadian Institutes for Health Research recommends that patient partners be included in all stages of governance, priority setting, developing research questions, “even performing certain parts of the research itself” so that the research is “relevant and valuable to the patients that it affects.” Yet we have much work to do yet to get to a full understanding of what being “partners in research” really means.

For the research to be truly collaborative, it must start first with mutual respect. That means valuing the time and effort of patient partners – be they individuals with lived experience or family members sharing their experiences.

Patient partners should be offered payment for the time and knowledge they bring to a research project – and it should be reflective of their expertise, not just a token $25 gift card, just as everyone else involved in the research project is adequately compensated for their time.

Many research projects lag during the recruitment phase because it is often difficult to recruit people with lower income jobs because they can’t afford time off work to donate to a project.  But, if they were compensated fairly, this could change that reality.
In Canada, every research group conducting patient-oriented research has compensation guidelines, but they haven’t been reviewed with an equity lens since they were created. It’s time they reflect the standards of fair practice, as international models recommend, embedded in Canadian labour laws.

We want a diversity of voices with lived experience represented in research, to make it relevant and meaningful to all those involved. This begins with equity and mutual respect.

Sharon McCarry is the Director of Citizen Engagement for the CHILD-BRIGHT Network.

Rabia Khedr and Emily Macrae
QUOI Media

In Canada, more than one in five people live with a disability. While almost everyone knows someone impacted, most people aren’t aware that government support doesn’t scratch the surface when it comes to covering even the most basic needs. Canadians with disabilities are more than twice as likely to live in poverty than the rest of the population.
People with disabilities have higher costs of living because they face costs other Canadians have never had to consider. There’s a misconception that things like accessible home adaptations and essential mobility aids are covered by public programs. Yet coverage across a patchwork of federal, provincial and territorial funding is partial at best, forcing people living with disabilities to choose between buying food and accessing the Internet or even fundraising to meet their basic needs.
In British Columbia, Madeline is literally fundraising to stay alive. Her financial vulnerability is urgent and increases by the day. She writes: “In B.C., [disabled] people receive about $1,000 per month less than what a healthy person earning minimum wage makes in a 40-hour week.” After four decades navigating so-called “social assistance,” Madeline is exhausted and deeply in debt. When she runs out of money, she plans to access the only other public service available to her: medical assistance in dying.
Madeline’s dilemma is far from unique. Statistics Canada confirms that over a quarter of people with disabilities cannot afford required assistive devices and prescriptions. What would you do if you couldn’t afford medication to control your pain? Or if the wheelchair you needed to move independently broke down before your province’s rules allowed funding for a new one?
The Disability Without Poverty movement emerged during the pandemic to address these injustices. The organization brings together people from communities across Canada with a diversity of disabilities and other intersecting identities. The movement advocates for a Canada Disability Benefit that would enable each person with a disability to be prosperous, realize their power, pursue their passions and participate in every aspect of society. It’s a vision that requires not only a unified disability movement, but action from all Canadians to push for collaboration between all levels of government.
The 2020 throne speech proposed “a new Canadian Disability Benefit modelled after the Guaranteed Income Supplement for seniors.” This commitment was renewed in the 2021 budget and must not be forgotten amid recent concerns around inflation.
People living with disabilities were neglected long before the pandemic and continue to face barriers to full social and economic participation. COVID-19 only highlighted the ways that ableism operates in Canadian society and our economic system.
The pandemic also prompted deeper consideration of the types of infrastructure required to support Canadians, and it isn’t just roads and railways. It’s systems of care that includes financial support.
In the early days of COVID, Ottawa moved quickly to support Canadians facing unemployment by introducing the Canadian Emergency Response Benefit (CERB). The same care and attention was not extended to people with disabilities, who had to wait months for a symbolic $600 that was only available to people who qualify for the narrowly scoped Disability Tax Credit. Even this gesture often did more harm than good.
The current system of income support for people with disabilities is designed around clawbacks. It’s a term that casts a long shadow in the disability community: essentially, if a person’s income or assets go up, then social assistance goes down. In Ontario, this meant that people receiving provincial disability support who were eligible for CERB lost $900 of every pandemic response payment.
The lack of co-ordination between federal and provincial programs adds insult to injury because, as Madeline’s experience shows, people receiving government assistance still live well below the poverty line. As a result, Disability Without Poverty argues for a national income supplement that would stack on top of existing benefits rather than compromising other forms of support.
It is time for Canada to shift from social assistance to social infrastructure. While current social assistance programs are fragmented, difficult to navigate and built around restrictions, social infrastructure focuses on dignity rather than diagnosis, capacity rather than clawbacks. Adequate income support will enable people living with disabilities to contribute to shared spaces and services for all Canadians.
Rabia Khedr is the National Director of Disability Without Poverty. Emily Macrae is a disabled writer and organizer combining policy analysis with lived experience to build accessible digital and urban environments.

David Gomez and David Urbach
QUOI Media
Access to elective surgery has been decimated by the COVID-19 pandemic. The first three months alone were responsible for over 28 million elective surgeries being delayed or postponed worldwide. The Canadian Institute for Health Information (CIHI) estimates that 560,000 fewer surgeries than expected were performed across Canada between March 2020 and June 2021, and that doesn’t include data from Quebec.
This is catastrophic. Without significant intervention, many Canadians who are waiting for elective surgeries may never have an operation. The burden of suffering and its impact on our mobility, vision, fertility and quality of life will be felt for years to come.
Formulating a surgical recovery strategy is an urgent policy priority. But addressing the crisis will take more than time and money; it will require a radical overhaul away from traditional individual surgical practice toward integrated group models of care.
The need to conserve hospital and critical care capacity for COVID-19 illnesses resulted in public health directives to stop all elective surgery in many Canadian provinces. The resulting backlog of unmet need has continued to grow as healthcare professionals are redeployed away from surgery to care for COVID-19 patients, are sick with COVID-19 themselves, or have left the profession altogether.
But we can’t only blame the pandemic for poor access to elective surgery. Our surgical wait time woes predate the pandemic.
The Commonwealth Fund 2021 report ranked Canada second to last among 11 similar economies in access to care. Even before the pandemic, approximately 30 percent of patients awaiting joint replacements or cataract surgery, for example, exceeded Canadian wait time targets.
Long wait times for services have long been grudgingly accepted by Canadians as an acceptable tradeoff in our single-payer, universal, publicly funded healthcare system. However, patience with the status quo will be tested once the real impact of the COVID-19 pandemic on elective surgeries becomes apparent.
How do we recover? We need to begin first by changing our mindset.
The term “elective surgery” is frequently misunderstood. In Canada, “elective” does not imply optional surgery. “Scheduled surgery” has been suggested as a more accurate term for operations that may be required for conditions such as cancer, cardiovascular disease, vision loss or debilitating chronic joint pain. While different wait time targets are acceptable for different types of scheduled surgeries — for example, cancer surgeries were prioritized throughout the pandemic given the potential of cancer progression — prolonged wait times for non-cancer surgeries can cause deterioration in health that may be life or limb-threatening, lead to poor quality of life, major economic burdens, and potentially even render a patient ineligible for scheduled surgery.
Canada needs a surgical recovery strategy. But increasing health care spending without fundamentally re-engineering how surgery is coordinated and delivered in Canada will not be enough. In fact, throwing more money into the existing system will only exacerbate systemic inequities that currently discriminate against disadvantaged patient groups, as well as certain health care providers, such as women surgeons.
At its core, access to surgery is determined by three factors: supply, demand and coordination. Most backlog recovery strategies focus on increasing the supply of surgical services: broader use of hospital payment models, increased hospital efficiency and rebuilding the health care work force.
We could also reimagine the way we use hospitals, incorporate new anesthesia techniques and anesthesia care providers, and expand virtual care for recovery at home, which can all reduce costs and free up hospital beds to further increase the supply of surgical procedures.
These would all be important steps. But without first addressing the lack of system-wide coordination of surgical services, this won’t be enough.
Importantly, we need to implement single-entry models for surgery and move away from traditional independent surgical practice towards integrated group models of care. By aligning doctors within groups, patients can enter a single referral queue and can be seen by the next available surgeon, slashing wait times and creating a more equitable system of care. Almost every other industry where people wait for services — banks, call centres, amusement parks — uses single-entry models to manage wait times.
Reimagining our system of surgery must begin with ensuring that all patients have faster and more equitable access to surgical services.
We have a once-in-a-generation opportunity to redesign the way Canadians receive surgical care and restore the public confidence that is required to preserve our unique health care system for future generations.
David Gomez is an Assistant Professor of Surgery at the University of Toronto and a Scientist at the Li Ka Shing Knowledge Institute of Unity Health Toronto. David R. Urbach, MD is the Lead Medical Executive and Head of the Department of Surgery at Women’s College Hospital, Toronto and Professor of Surgery and Health Policy at the University of Toronto.

The federal environment commissioner recently found that Canada’s record on combatting climate change was the worst among G7 countries since the signing of the Paris Agreement in 2015. This was attributed in part to the government’s “policy incoherence,” as seen with investments such as the Trans Mountain pipeline expansion.

These investments fit within a longstanding pattern of hefty federal support to oil and gas companies, mostly through federal agency Export Development Canada (EDC). At last count, this support, which Ottawa does not consider a subsidy, totalled an average of $13.6 billion each year from 2018 to 2020. This made Canada the largest provider of public finance for fossil fuels in the G20. Only Japan, South Korea and China came close to rivalling Canada’s support.  

The government recently acknowledged the problem, and has committed to “developing a plan” to phase out public finance for the fossil fuel sector.

At the UN climate conference (COP26) in November, Canada joined over thirty countries in pledging to eliminate a portion of this finance – “direct” support for “unabated” fossil fuel energy overseas – by the end of this year. Uncertainties remain, however, as to how Ottawa will end up defining key terms, such as “abated,” which is often used to describe projects with carbon capture. It also has yet to define the “limited” circumstances under which exceptions may be made.

What’s certain is that the pledge will cover a mere fraction of Canada’s fossil fuel finance: roughly $1 billion, according to a preliminary government estimate. The commitment leaves intact the massive sums that the government provides to the industry in Canada, which in recent years has included billions in loans to projects such as the Trans Mountain and Coastal GasLink pipelines.

The natural resources minister stated in November that a timeline for eliminating Canada’s domestic fossil fuel finance would be announced “in the next few months.” He is collaborating with the ministers of finance and of the environment in hammering out the details of Ottawa’s phase-out plan.

This timeline must at a minimum reflect the same urgency as the COP26 pledge. The International Energy Agency has warned there can be no new oil and gas fields developed if the world is to hold global warming to the critical 1.5°C threshold. According to a recent study in the journal Nature, Canada must leave approximately 83 per cent of its fossil fuel reserves unexploited if the world is to have even a 50 per cent chance of meeting this objective.

Despite this, Export Development Canada has no plan to end its support for fossil fuels. It has committed to a moderate reduction of its support for oil and gas exploration and production, yet remains free to maintain or even increase its support for pipelines or refineries.

The impact of Ottawa’s commitments, regarding both the overseas and domestic components of its fossil fuel finance, will thus depend on the speed and robustness of implementation, and in particular on the presence of gaps in the government’s plan that could allow EDC to continue propping up fossil fuel companies.

Acknowledging a “climate emergency,” as Parliament has done, means that there can be no allowances for supporting new refineries or pipelines, whether for oil or gas.

And it means that there can be no loopholes for supporting oil and gas companies that simply promise to capture their on-site emissions. In a recent letter to the finance minister, hundreds of Canadian climate experts warn that carbon capture is “neither economically sound nor proven at scale,” and is being used to boost oil production, resulting in an increase in overall emissions when that oil is burned.

Carbon capture does nothing to address these downstream emissions that constitute 80 per cent of oil and gas emissions. Far from being a climate solution, they warn, the technology “prolongs our dependence on [fossil fuels] at a time when preventing catastrophic climate change requires winding down fossil fuel use.”
 
It’s time to end Canada’s half-measures on climate. Ottawa must initiate a swift and complete phase-out of all public financial support for fossil fuel development of any kind, in Canada or abroad.

Karen Hamilton and Shawn Katz work at Above Ground, a project of MakeWay Charitable Society that seeks to ensure companies based in Canada or supported by the Canadian state respect human rights and the environment.

Stephen Jackson and Graham Singh

QUOI Media

Could 2022 become a year of healing for Canada’s social infrastructure? And what could a renewed social infrastructure strategy look like?

A recent report led by Jay Pitter, and more than 25 co-authors, recently redefined social infrastructure as “the co-creation processes, publicly accessible local systems, social movements, physical spaces and services that foster community connectivity and mutual care.”

We need new ways to foster economic independence and break down systemic barriers in employment, education, policing, medical and financial systems to see this new social infrastructure vision created. Healing means allowing families to rebuild, giving back resources, raising awareness, and most of all, renewing true sovereignty for equity-seeking groups, such as Black-, female-, Indigenous- and LGBTQ2S-led organizations.

In other words, traditional social institutions must step aside, lay down their treasure and learn.  

Anishnabeg Outreach has demonstrated the impact of one small local Lutheran church building when it acquired and transformed it into a First Nations Healing Centre. The centre was once a site for German-speaking Christian worship in the heart of Kitchener, Ontario. Today, mature cedars and a community-built labyrinth welcome neighbours of all backgrounds to come and learn about the ancient medicines of Canada’s First Peoples. 

Waterloo Region’s tech sector has supported this project by developing Anishnabeg Outreach NEST, short online courses on entrepreneurial leadership, software coding, community development, and more, offered free to band councils and reserves across Canada. This small patch of reconciled land has become an engine for healing and the co-creation of Anishnabeg Outreach has engaged multiple local communities, both Indigenous and non-Indigenous, to maximize impact.

Trinity Centres Foundation (TFC), a Montreal-based charity, endeavours to inspire other local religious congregations to find similar ways to give their underused properties over to the work of reconciliation and healing. Founded by a national collective of social, finance, urbanist, legal and faith-based activists, TCF aims to see 100 historic colonized church sites released and hopes one-third of them will become BIPOC-owned and operated.

Imagine if Canada’s historic cathedrals were not only preserved, but strategically renovated and architecturally recrafted to model a new social infrastructure to come. Imagine a circus company, refugee non-profit, addiction support group and major conference operator all under one roof and with doors open to its local community.  

The social sector is often defined by social work: the vital dollars invested in employees on the ground. Social infrastructure speaks to the deeper economic tools needed by these urban saints: community hubs, accessible rental venues for start-up charities, affordable housing, and more.

Social work is funded by grants. Social infrastructure needs a new type of financing: it’s a question of rail cars versus rail lines.  

Canada’s long-awaited Social Finance Fund must now be released as the social finance rail line we need. The fund, set to release $755 million from 2022 to 2025, aims to advance justice, healing and reconciliation in practical ways, like turning church properties into healing centres. Bring together Canada’s renewed Black ecosystem, a steadfast inclusion of LGBTQ2S+ leadership and the incredible goodwill of Canada’s traditional institutions and this dream begins to come alive.

Complex mainstream infrastructure funding by governments, pension funds, private equity consortia must now invest not only on the delivery of these new systems, but also in their design. This is the detailed work of impact finance innovation.

As Canada prepares for the visit of Pope Francis to work out a new pathway of healing between the Catholic Church and Indigenous peoples in Canada, what can we do to ensure that such a moment rises from tokenism and spurs systems level change? How can every Canadian play their part in the co-creation of the social infrastructure of tomorrow so that no one is left behind?

Setting the table for this engagement may be the role of Canada’s community and granting foundations, but the responsibility of preparing a new feast of reconciled healing is ours to share. Stephen Jackson is the CEO of Anishnabeg Outreach. Graham Singh is the CEO of Trinity Centres Foundation. Both charities are focused on building centres of healing across the traditional and unceded territories of First Nations in Canada.

Bartha Maria Knoppers, Daniel Turp and Michael J.S. Beauvais

QUOI Media

The United Nations and the World Health Organization (WHO) were born out of a watershed moment following World Word II, created to be ready institutions for the global community in times of crisis. Unfortunately, the WHO was ill-prepared to tackle the COVID-19 pandemic when it fanned out across the globe – guidance came too slow and was largely ignored when valuable evidence-based recommendations were provided. 

Poor preparation and weak regulations, among other factors, failed us. 

Our current global pandemic has the potential to be a similar watershed moment. We must build on lessons learned. Global governance on pandemic preparedness is needed now more than ever. We can – and must – build a new, specific and binding agreement that will be effective in future crises. 

It’s time we crafted and adopted an international pandemic regulation (IPR).

Such a new regulation would minimize both current threats and the potential disruption of new threats to global health. We simply cannot continue fumbling along, relying on countries’ individual self-interest and lukewarm concern for humanity as a whole.

The case for a distinct international pandemic regulation is obvious.

What should a new regulation encompass?

Foundationally, we need to recognize global health as a common good to which everyone is entitled.  This would go beyond the current WHO support and appeals for vaccine equity.

Secondly, we also need to mandate and resource ongoing national infrastructure efforts to establish vaccine manufacturing capacity and distribution in order to address local health needs through international collaboration. 

Importantly, we need to translate UNESCO’s November 2021 Recommendation on Open Science into meaningful  rules for the sharing of data and knowledge related to vaccines and therapeutics. 

Above all, we need binding rules for the governance of pandemic data.  A new regulation should mandate the responsible, accountable sharing of data to further global security and human health.

What’s wrong with the current WHO regulations?  They don’t go far enough.

The WHO International Health Regulations (IHR) aim to prevent, protect against, control and respond to the international spread of disease while avoiding unnecessary interference with international traffic and trade. They do not contain specific rules dealing with pandemics and do not oblige states to take either specific actions or be subject to sanctions.

This must change.

The good news is that the WHO has already taken steps in the right direction. Last month, they adopted a consensus decision to draft and negotiate a “convention, agreement or other international instrument” on pandemic prevention, preparedness and response. The details concerning the drafting and negotiation have not yet been crafted. 

When it comes to the legal nature of the document, the idea of a treaty or convention has been promoted, or updating the 2005 International Health Regulations and adopting, as was the case in 2005 after the SARS epidemic, amendments.

To date, no one has proposed the adoption of a distinct regulation applying specifically – and exclusively — to pandemics. But this should be the path forward. 

Why?

Whether it’s a treaty, amendment to existing regulations or the adoption of a new regulation, the rules would be binding for all member states. But there’s a major disadvantage in choosing the treaty avenue; it would require ratification by a minimum number of WHO states to come into force. In the case of the Tobacco Treaty, this minimum number was 40. And it has taken nearly 20 years to obtain the ratification of 182 States (still short of universal application).

In contrast, any amendments to existing regulations or the adoption of new regulations would have the potential of binding all members shortly after their adoption. The sole requirement for the adoption of regulations is a consensus without any additional procedures such as ratification for its entry into force (between nine and 24 months according to the past practice of WHO).

Adopting a new regulation would also avoid the very real and well-known danger of reopening existing regulations leading to multiple and endless amendments not necessarily related to pandemics.

But the major reason to opt for a new regulation is the necessity of adopting a specific regime that highlights the urgent, unique and global nature of pandemics; this requires immediate and effective international collaboration and resolution.

We need an international pandemic regulation that will bring about an effective, agreed-upon response to both the current and next pandemic.

While we cannot know when, where, or how the next pandemic will come about, we still have the ability to choose how we, as part of a global community, will prepare for and respond to future threats. Bartha Maria Knoppers is Director of McGill University’s Centre of Genomics and Policy and the Canada Research Chair in Law and Medicine. Daniel Turp is emeritus professor at the Université de Montréal’s Faculty of Law. Michael J.S. Beauvais is a privacy researcher and doctoral student at the University of Toronto’s Faculty of Law.

Stephen Huddart

QUOI Media

 

In the recent book, Speed and Scale: An Action Plan for Solving Our Climate Crisis Now, there’s a graph that shows the greenhouse gas emissions per kilo of various foods. At the top of the scale, one kilo of beef produces 59.6 kilos of emissions. By comparison, a kilo of tofu generates three kilos. Most fruits and vegetables? Less than one. This explainer shows how reducing beef in our diets is one of the biggest contributions we can make to lowering greenhouse gas emissions.

Governments and the private sector bear most of the responsibility for setting and meeting emissions reduction targets. However, reaching and sustaining those goals will inescapably depend on individuals’ behaviour changes, too.

The 2020 UN Emissions Gap report shows that our lifestyle choices — including size of residence, modes of transportation, food and the purchase of consumer goods — generate two-thirds of all carbon emissions.

According to research cited in the 2021 Cambridge Sustainability Commission on Scaling Behaviour Change, if the richest 10 per cent of humanity lowered their emissions to the level of the average European, global emissions would drop by one-third.

Where to start?

First, by recognizing that in addition to net carbon reductions, the actions we take motivate governments and companies to move more quickly. Reducing emissions through lifestyle changes motivates our families, friends and neighbours and catalyzes broader systemic shifts.

 

Change our diets

 

Consuming less meat and dairy, while eating more grains, fruit and vegetables benefits the environment and leads to improved health outcomes. A win-win, but we also need to assist affected farmers and their suppliers in transition.

 

Fly less often

 

Thanks to COVID-19 and the spread of flygskam (flight shame), cutting back on flights and holding more online meetings is already underway. Given that we live in a large country, air travel might be something that needs to be retained and substantially offset. It may be time to make offsets mandatory and hold airlines responsible for providing them.

 

Buy less stuff and buy from companies with a social and environmental bottom line

 

Overcoming society’s addiction to excessive consumption opens up opportunities to improve everyone’s well-being, including that of future generations and the non-human world. However, advocating for reduced consumer spending conflicts with pervasive assumptions about economic growth and social well-being.

When will we accept that buying things we don’t need deepens the multiple crises we’re in? A robust sharing economy would ensure no one need go without essential goods like vehicles, tools and children’s sports equipment.

The emergence of a circular economy — replacing our current, linear “take, make, use, waste” society with one that conserves material resources, reduces energy and water use, and generates less waste and pollution — offers the means to decarbonize whole supply chains while enabling people to be equitably employed.

 

Invest in transition

 

The finance and investment field is another area where massive change is needed and where individuals can make a difference. At COP26, UN Special Envoy for Climate Action and Finance Mark Carney announced nearly 500 banks and investment firms had agreed to align $130 trillion in their control with the Paris Agreement’s climate goals.

We’re talking about everyone’s savings and investments, and investment firms are racing to make ESG (environment, social and governance) options available to individuals. But when was the last time your pension fund asked your opinion or gave you an option to direct a portion of your pension fund investments to Indigenous-owned companies or to regenerative agriculture?

 

Speak up

 

Talk about what concerns you. Volunteer. Advocate. Governments pay attention to letters and petitions, and companies respond to market signals. At home, at work and in our communities, we must discuss what matters most to us as society embarks on large-scale transition, insisting on public consultations where all are included.

It is important not to shame people who can’t afford organic food or an electric car, but to build community solidarity and resilience around the contributions each of us can make.

With governments and the private sector now stepping up, but still falling short of what’s needed, the actions we take and the choices we make become all the more important. With little time to act, our mantra should be, “bolder, faster, together.”

Stephen Huddart is a member of the Transition Innovation Group hosted by Community Foundations of Canada.

Michael Wolfson

QUOI Media

Recent outrage by some members of Parliament about an alleged secret collection of Canadians’ data by the Public Health Agency of Canada (PHAC) illustrates how misguided many are about the various kinds of personal data — and how they should and should not be used.

Broadly speaking, we should differentiate between two kinds of data that can be collected about people. One is individually identifiable data: In the area of health care, these data typically contain sensitive information — including our names and medical conditions — that we would not want anyone except our health care providers to see.

The other kind of data that pertains to people is known as grouped, or aggregated, data. For example, the number of individuals admitted to hospital who are infected with COVID-19. This kind of data is essential for governments to plan for and provide quality essential services to Canadians.

A second key distinction is how individual data and grouped data should be used. It is vitally important to distinguish “public good” uses from private-sector and commercial uses. Until about a decade ago, private-sector uses were well below the radar, since the means to gather huge amounts of personal data were far more limited. However, with the dramatic growth of big tech firms, along with the dramatic penetration of smartphones into our personal lives, the private sector has become a giant player in collecting and using sensitive, individually-identifiable data.

The problem with the recent loud squawks and ill-informed claims attempting to connect PHAC’s use of cellphone data to an infringement of Canadians’ privacy is that it fails to grasp these distinctions.

One of the most important public health interventions over the past two years in dealing with the COVID-19 pandemic has been the encouragement of physical distancing — if two people are not near each other, the virus cannot spread. An obvious way to monitor how well this is working is to check mobility patterns, such as seeing how often people are staying at home and whether areas with more crowding have higher rates of infection.

Collecting this kind of data would have been virtually impossible 10 years ago, but with modern smartphones, mobile-service providers can observe the nearest cell tower for each phone on their network. It is quite easy for them to determine what percentage of each day a phone is near a single tower. Using this information, they can produce aggregated data for a series of neighbourhoods, generate statistics and then determine, for example, the proportion of cellphones that were in their ‘usual place of residence’ for most of the day — or places that appear more crowded and have a likelihood of higher infection rates.

Even if there were low limits on the radius of the locations assessed — covering, say, at least 20 phones — there is no way the data could be used to identify any unique individual, since they would be aggregated.

These are the kinds of aggregated phone data provided to PHAC, and they have been vital for informing government policies how to best target shutdowns and other physical distancing measures to fight the pandemic while minimizing the inevitable harms for businesses and individuals.

These data do not invade anyone’s privacy.

However, the ways in which telcos and big tech firms are collecting and using individually identifiable data is another story.

The kinds of information routinely collected via the use of smartphone apps and social media sites, for example, are being collected lawfully, with “consent,” and often for good and useful purposes. But does anyone really check the legalese in the fine print of these consent statements before clicking “accept” so that they can thoroughly understand how their data will be used?

The outrage over PHAC and data collection highlights a major issue in Canada. On the one hand, we do not really know how all of the data collected by private-sector firms are being used. On the other, unwarranted privacy fears risk hobbling all sorts of highly important and positive public uses of data.

While the risk of reidentification of individuals from aggregated data may be vanishingly small, it would be helpful to add privacy protections to the criminal code to make it an offence for anyone, intentionally or maliciously, to reidentify any individual.

Equally important would be for Canada’s Privacy Commissioner, assuming his detailed investigation does not uncover anything more than is already public, to state very clearly that PHAC did not invade anyone’s privacy and that the use of these data was clearly for the public good.

Stronger regulation of big tech firms – at the very least, insisting on greater transparency about their data collection and use — remains important, but must be distinguished as another matter entirely.

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

By Jeremy Carver and Michel Chrétien

Canada has welcomed antivirals as a new weapon in the fight to contain the COVID-19 pandemic and alleviate the overcrowding of our hospitals and intensive-care units (ICU). Health Canada’s approval of Pfizer’s antiviral, Paxlovid, has evoked an enthusiastic response from many politicians, physicians and journalists. This endorsement of the key role for antivirals is long overdue.

In the rush to acquire vaccines, Canada overlooked the need to simultaneously create an antiviral development strategy. We need to make up for lost time.

It’s imperative that our federal government create a robust, sustainable, organization dedicated to delivering more antivirals as part of our commitment to improving the global response to pandemics.

Antivirals are essential to ending this pandemic and getting Canada back on a path of new normalcy. To avoid the emergence of drug-resistant SARS-CoV-2, many more antivirals will be needed.

When AZT was first approved in 1987 as a treatment for HIV, it was the only drug available. Now, thirty-five years later, there are more than 30 treatments available, and in the right combinations, drug resistance can be avoided, and symptoms managed.

Another public health benefit of antivirals is that the treatment of infected individuals at the time of diagnosis can lower their viral load and reduce transmission to immediate contacts. This has been shown with triple therapy for HIV and Tamiflu for influenza. Antiviral treatment also reduces the severity of symptoms, benefiting the patient, reducing time in hospital or ICUs, and saving the health care system added costs.

We also need treatments for the surviving patients who are experiencing long-COVID symptoms, such as chronic fatigue and fibromyalgia, cardio-pulmonary sequelae, renal failure, anxiety or depression.

What form should Canada’s antiviral initiative take?

To discover and develop more antivirals will require funding on the same aggressive scale that was used for the acquisition of vaccines.

As a start, Canada has recently committed $18.5 million annually to create a “Centre for Research on Pandemic Preparedness and Health Emergencies.” The Research Centre’s mission is broad, and while it includes developing and mobilizing research for pandemic response, it will not be able to deliver the antiviral therapies essential to a robust pandemic response.

How could this be expanded to be successful?

We believe, that in addition to this Centre, Canada should create a highly focused new entity – a global collaboration for antiviral discovery and development. The mission of the new collaboration should be to establish a not-for-profit antiviral drug development pathway for academic discoveries — all the way to patients.

We suggest that such a collaboration be made up of two parts: a focused research organization (FRO) dedicated to antiviral development, embedded in a new academic Network of Centres of Excellence (NCE) focused on antiviral discovery. Canada should urgently launch a competition for the new NCE that could bring together the medicinal chemists, structural biologists, pharmacologists and virologists that will be needed to discover new antiviral drug candidates.

The new collaboration would work in partnership with existing Canadian facilities, such as the pre-clinical testing capability at the National Microbiology Laboratory level 3 and 4 biosafety labs or the new National Research Council manufacturing facilities in Montreal. Any collaboration agreements between these entities, or others, should follow open-science protocols.

Canadian scientists and institutions would then be able to participate meaningfully in the billion-dollar philanthropic efforts represented by the World Health Organization’s therapeutics pillar of ACT-A. Such a collaboration with low-and-middle income countries, would foster global efforts for better pandemic preparedness and response.

One illustrative attempt to discover new COVID treatments has been nicknamed the “COVID Moonshot.” It is an international collaborative effort to discover potential therapeutics that was kick-started through Twitter.

Even though this collaboration has rapidly succeeded in finding drug candidates, the “Moonshot” founders note that they are now at the “hard slog” stage – the need for capital to conduct numerous regulated trials, and the subsequent manufacturing and distribution of antivirals globally once they are approved by the regulatory authorities.

For too long the global community has assumed that the pharmaceutical industry will do the “hard slog” and has resigned itself to paying the exorbitant prices that follow. The experience of the Moonshot group emphasizes the need for a not-for-profit pathway for the development of treatments derived from academic collaborations.

A global collaboration for antiviral discovery and development would be a pioneering initiative that Canada is well positioned to lead.

Jeremy Carver PhD is an Emeritus Professor in the Faculty of Medicine, University of Toronto, and President, CEO and co-founder of the not-for-profit International Consortium on Anti-Virals/Consortium International sur les Thérapies Antivirals

Michel Chrétien, FRS, MD is Professeur Émérite de recherche, Institut de recherches cliniques de Montréal and a co-founder of the not-for-profit International Consortium on Anti-Virals/ Consortium International sur les Thérapies Antivirals.

 

Narinder Dhami

QUOI Media

Diversity is the brand of Canada. Also in Canada, nearly ninety per cent of venture capital investment deals are directed to companies founded exclusively by men. Black charities receive as little as seven cents for every hundred dollars donated to Canada’s big charities. Indigenous organizations receive just over one-half of a per cent of charitable donations in Canada.

 

Eighty-five per cent of money invested in Canadian venture capital funds goes to funds with no female partners. And less than three per cent of venture capital is invested in women founders, with nominal investments in women of colour. Canadian Foundations that invest in impact investing, invest almost exclusively in white or male fund managers.

 

We often think of being good or bad as binary and static. As Canadians, our attachment to being good people risks our ability to be better.

 

Despite the conversations on equity and diversity, there are growing inequalities in capital flows — amplified through the impacts of COVID-19 — that threaten economic growth and social cohesion. From philanthropy to impact investing to venture capital, communities with diversity across gender, ethnicity, ability, sexual orientation, geographically, among others, lack access to capital.

 

When it comes to addressing capital flows, action towards equity is fragmented, siloed and slow, while displays of commitment to change are rapid and abundant.

 

Toronto Raptors President Masai Ujiri reflected on the composition of the audience at his recent Giants of Africa gathering. He noted that had George Floyd been murdered a week ago, the room would look different. Making meaningful change is not accomplished in a moment. It requires a movement and a sustained commitment.

 

We can move beyond a scarcity mindset which makes us believe that we do not have enough money to invest in diverse leaders and founders. This mindset amplifies that one investment we made in a diverse founder or fund while ignoring our broader portfolio. It leaves those with the least power without access to capital.

 

We can collect disaggregated data to know our baseline, set targets and build accountability systems to help make capital more inclusive.

 

We can approach increasing capital to underrepresented communities as a business problem, mobilizing the appropriate resources and capacity to solve it. Building a competitive and economically prosperous Canada is accelerated when we tap into the vast talent across all of our communities. When capital flows are limited due to risk perception, networks and systems, we miss out on this opportunity.

 

Through collaborative research, shared resources and increased transparency, we can accelerate access to capital to those excluded. We can advance inclusive approaches to increase social and economic prosperity for all by flipping orthodoxies, challenging the status quo and investing in undervalued founders, managers and leaders.

 

Equitable capital flows will not be achieved through diversity days. Just as a single workout does not result in rapid health transformation, meaningful progress toward equity requires sustained action.

Narinder Dhami is the Executive Lead of New Power Labs.