While it is admittedly early to contemplate the far-reaching implications of the COVID-19 pandemic for Canada’s health system, one thing is already unequivocally clear: we have at our disposal only a single resource capable of moving with the alacrity and agility of a lethal virus.
If we are to arrest transmission of infection, we need to accelerate transmission of data—and the COVID-19 pandemic has emerged as a crucible of invention and improvisation across the health data ecosystem. Our experience over the past few weeks is shedding light on the power of data and digital tools to enable real-time decision-making, drive innovation, empower patients and ultimately protect and improve health and wellbeing—and it is also exposing in stark relief the work that remains on the journey toward healthcare digitalization.
COVID-19 has made it impossible to ignore the limitations of Canada’s health data ecosystem for science, policy and public health. There is compelling evidence that specific populations (e.g. the elderly, individuals with pre-existing health conditions) are at higher risk of complications from COVID-19, including death. We also know that some populations, including many Indigenous communities, may be particularly vulnerable to the COVID-19 outbreak due to chronic resource shortages, overcrowding and the lack of running water, further compounded by higher rates of pre-existing conditions. But the way in which we collect data impedes our ability to understand the impact of COVID-19 within these subpopulations. National data collection only focuses on age and sex; each province uses different data collection methodologies and tracks different metrics. Our disparate, disconnected and incomplete data limit our ability to extract insights that can drive research (e.g. what are the biological markers that will help us to assess risk?), clinical and policy decisions (e.g. which interventions work best in which populations and under what circumstances?) and public health (e.g. how can mitigation strategies meet the unique needs of individual communities?).
To mitigate the spread and impact of COVID-19, jurisdictions are rapidly filling gaps in healthcare digitalization by enacting policies to improve data collection, integration, sharing and privacy. British Columbia, which has some of the strictest regulations in the country regarding where personal data can be stored, is a case in point. Responding to a need to make a wider range of digital communication tools (e.g. Slack, WhatsApp) accessible to doctors, patients, teachers and students, British Columbia has temporarily modified its Access to Information and Privacy Act, lifting a requirement that personal data must be stored in Canada. While implemented as an emergency measure, this exception does not represent a temporary relaxation of privacy provisions; if anything, it is a reminder that the purpose of privacy legislation is not to make data inaccessible, but rather to provide clarity and certainty so that data can be accessed ethically, safely and compliantly. As Michael McEvoy, B.C.’s Information and Privacy Commissioner, observed: “Access and privacy laws are designed to allow for the sharing of information.”
Data sharing across sectors and sovereign boundaries is driving the research community’s agile response to COVID-19 and accelerating innovation. as a New York Times headline recently noted, “COVID-19 Changed How the World Does Science, Together.” The unprecedented degree, pace and non-competitive nature of data-sharing has been central to this collaborative transformation. For example, TransCelerate, a not-for-profit collaboration of 21 global biopharmaceutical companies, is leveraging its cloud-based platform to share de-identified, anonymized preclinical and clinical data, including control arm data from ongoing and planned COVID-19 clinical studies, as well as data from past studies in related diseases or patient populations, to make the testing of COVID-19 therapeutics and vaccines safer, more efficient and guided by better science.
Data sharing is central to Canadian researchers’ substantial contribution to the global response to COVID-19. Across the health research and innovation continuum, Research Canada’s members are harnessing the power of digital tools to advance our understanding of COVID-19, drive therapeutic, vaccine and diagnostic innovation, and generate evidence to support better healthcare decisions. The University of Calgary’s two-year global prospective study involving children with suspected COVID-19 will enable real-time data sharing with national and international authorities, helping policymakers make rapid, evidence-based adaptations to case screening and management for earlier identification of children at high risk of COVID-19 infection and severe outcomes. Working closely with the WHO and other international partners, researchers at UHN are using human mobility and surveillance data to generate forecasts and guide public health policy during the COVID-19 pandemic, with a specific focus on low- and middle-income countries in Southeast Asia.
The digital tools employed in response to COVID-19 have reinforced the importance and possibility of digital health innovation beyond the pandemic. COVID-19 is forcing us to confront the reality that we need better digital tools and need to use digital tools better if we are to meet 21st century health challenges. Applying human and artificial intelligence, BlueDot is a Canadian firm specializing in automated infectious disease surveillance. By analyzing news reports from around the world, forum and blog posts, airline ticketing data, animal disease networks and more, BlueDot can detect early signals of disease outbreaks and was among the earliest to break news of COVID-19 in December 2019. If widely accepted and adopted, digital tools harnessing diverse, often unconventional, datasets offer the potential to identify patterns and guide action that can save lives.
The public—hungry for COVID-19 information, increasingly aware of the power of personal health data, and engaged with the choices they need to make to ensure they benefit from their data—is emerging as the driver of change. We can see the power and potential of this growing public movement in the creative grassroots efforts that are helping to close gaps in our official datasets. For example, as of 17 April 2020, there were over 418,000 voluntary submissions from Canadians reporting their personal COVID-19 symptoms to Flatten.ca, a not-for-profit website that uses self-reported data to identify COVID-19 hotspots. If anything, this initiative demonstrates that Canadians are willing to share personal information if they can envision the potential for personal and public benefit.
While the metaphor has become cliché, COVID-19 is a war. And it is true that in the theatre of war, you make exceptions—perhaps lowering the bar for approval and adoption of a new intervention because the risk of delayed introduction vastly exceeds the risk that it doesn’t work as promised—that would be unnecessary, even unconscionable, in peacetime. We will eventually return to peacetime. But it would be a grievous mistake to return to “normal” and forfeit the opportunity to advance systemic changes in the regulation, management and structure of our health data ecosystem essential to advancing science, policy and public health in the future.
Realizing this future will mean being clear about the attributes we expect to see in a resilient, accountable and impactful health data ecosystem. It will mean evolving from rigid interpretations that hold privacy sacrosanct to an enlightened understanding of privacy as an enabler. It will mean recognizing that the benefits of sharing personal health data (and the risks of not doing so) far outweigh the risks of error, and that risks can be curtailed by taking full advantage of existing and emerging technologies to protect the security and privacy of health data. It will mean applying Canada’s leadership in AI to analyze complex datasets and extract insights that will guide science and lead to better, more equitable care. It will mean increased focus on designing data systems that are interoperable and interconnected. It will mean re-engineering regulatory and reimbursement systems to accept and adapt to real-time, real-world evidence and digital innovations. Most importantly, it will mean empowering all stakeholders—and patients and the public, in particular—with the digital literacy and agency to contribute, use and benefit from health data responsibly, ethically and sustainably.
Until we optimize data collection, sharing and analytics and fully enable acceptance and adoption of innovative digital tools, we are missing opportunities to prepare for and respond to health emergencies, accelerate innovation and deliver effective, patient-centred care every day.
Health data are the bedrock of health research and a learning healthcare system. Health data are critical to our response to COVID-19 and give us hope that we might be turning a corner. At the same time, better access to high-quality health data earlier in the outbreak might have altered the trajectory of COVID-19 and prevented the human tragedy that it has become. We must learn from this experience and reimagine our approach to health data if we are to honour the lives COVID-19 has stolen.