Sharing is caring – app aims to fill gaps in health-data infrastructure

Ten years ago, while watching his son play in the park, Kumanan Wilson had a conversation with a mother that changed his life – she was lamenting the inefficiencies in how her child’s immunization history was recorded.

“She had two children and multiple (vaccination) cards for those children,” he says. “She complained to me about the paper records; how she can do her banking on her phone, but she couldn’t have a digital immunization record on her phone.”

The chat got Wilson – a doctor, professor and research chair in Digital Health Innovation at the University of Ottawa – thinking about solutions. He hired a first-year engineering student to help develop an app, CANImmunize, that would allow Ontarians to store their children’s digital immunization records and share that data with local health authorities.

Even before the COVID-19 pandemic, Wilson’s vision was that CANImmunize eventually would fill in the national infrastructure gaps that previous pandemics had exposed. After the SARS outbreak of 2003 and the 2009 H1N1 pandemic, multiple reports and recommendations outlined shortcomings in the country’s health data. Without data harmonization, the federal government doesn’t have a simple, intuitive or efficient way to communicate with provincial and municipal health authorities about vaccine inventories, immunization rates and case counts for illnesses. The information is siloed with provincial authorities and not centrally available, posing challenges to the federal government in procuring and distributing vaccines to the places that need them most, or quantifying case counts and vaccine efficacy.

Canada has fallen far behind in knowing what’s happening within its borders.

But despite those warnings over the past two decades, Canada has fallen far behind comparable countries in knowing what’s happening within its borders.

Vivek Goel is chair of the pan-Canadian Health Data Strategy Expert Advisory Group, a team established in the fall of 2020 to understand and address this subject. As Goel wrote in the first of the group’s three reports, released between June 2021 and May 2022, there isn’t a sole “smoking gun” cause for Canada’s lack of health data infrastructure – it’s a whole host of issues.

“What we’re really struggling with,” Goel tells Healthy Debate, “is the fact that we have a set of different delivery entities, and we have to connect information across them.” There’s your local care provider or family physician, your local health authority, the province as an insurance provider and then the federal government. Right now, there’s barely a system for communication between two individual health-care providers, let alone between multiple levels of governments.

Add to that varying data protection priorities at the provincial level, lack of political will or incentive to compare data across provinces (including for fear of embarrassment, Goel notes), and investments without accountability or conclusive results, and you have a system that remains fragmented, dragging the country’s pandemic response capabilities with it.

In prior years, CANImmunize had received funding from the federal government in its attempts to address these issues but that stopped during the pandemic. When both federal and provincial governments could have turned to Wilson’s expertise on data harmonization, they instead turned to U.S. consultants like Deloitte and McKinsey to manage the organization, procurement and tracking of vaccines.

“The domestic solutions have been independently identified as being the best solution,” says Wilson, “but there seems to continually be this (willingness to) go to international solutions.”

The issues are fundamental ones, says Wilson, like different provinces having different names for the same vaccine or routine immunization. “If provinces and territories are using different languages, you just simply can’t have any type of (data) harmonization,” he says.

The result is a database that can be accessed by clinicians, vaccine manufacturers and inventory managers.

CANImmunize has a solution: the Canadian Vaccine Catalogue, a national, standardized vaccine list that brings together information from Health Canada, vaccine manufacturers, the non-profit Canada Health Infoway and experts in the field. The result is a database that can be accessed by clinicians, vaccine manufacturers and inventory managers, and that can be fed into third-party, public-facing applications.

Another branch of the organization, CANImmunize Shield, is a workplace vaccine management system that allows employers to keep track of their workplace immunization numbers – self-reported by employees – and thus manage risk when case counts are high or immunization coverage is low. And, fulfilling Wilson’s initial goal, the CANImmunize app allows people to upload and keep track of their or their children’s vaccination records, see which vaccines they may have missed, receive reminders when they’re eligible for boosters and access and share information with their public health authorities. CANImmunize also helped Nova Scotia, P.E.I. and Yukon administer COVID-19 vaccines through its ClinicFlow vaccine booking software.

But it will take serious work and funding to help actualize the national solutions such as a bi-directional flow of information that integrates CANImmunize’s knowledge and user-volunteered information with data from public health authorities to build a comprehensive image of immunization in Canada. “It depends on what the federal government believes its role is,” Wilson says. “I don’t think they see this (data harmonization) as its role, but the provinces look at it as being (the federal government’s) role.”

There is much a pan-Canadian health data infrastructure could offer us, even beyond times of emergency.

Whether these data transparency efforts should be the responsibility of a third-party organization is still up for debate. There are some obstacles standing in the way of the federal government running an initiative like CANImmunize in-house, including the financial ability to hire, retain and pay app developers when faced with an increasingly competitive tech job market.

There is so much a pan-Canadian health data infrastructure could offer us, even beyond times of emergency. A system that centralizes or makes patients’ health information more easily accessible also would allow them to more easily communicate between providers – like when they move cities or provinces or go from a family physician to a specialist – mitigating the redundancy, wait times and poorer health outcomes that take place when providers fail to communicate. Patients would also be able to access their own records to understand what tests and treatment regimens they’ve undergone and make better-informed decisions about their health care.

Goel describes this proposed model as a person-centred, health-data system. In its ideal form, the system would have a “quintuple aim,” he says, “improving the individual’s experiences, the provider experiences, (creating) better population health outcomes, an efficient system and an equitable system.”

But if data harmonization continues to be treated like a hot potato passed around from levels of government to non-profits, to third-party American consultants, nothing will have changed by the next time we have a public health crisis.