Major gaps in the way health information is used in Canada means practitioners are often “flying blind” when caring for patients – a stark reality that can lead to poor health outcomes, avoidable deaths and inefficient use of already-strained resources, experts say.
That’s why many health information experts are applauding measures in Prime Minister Justin Trudeau’s multi-billion dollar health funding offer to the premiers this week that would compel provinces and territories to make significant changes to the way health data is collected, shared and reported.
Improving the way medical information is gathered and shared within provinces and nationally is necessary to address systemic gaps in care and to understand the reforms that are needed in Canada’s ailing health system, says Laura Rosella, an epidemiologist and Canada research chair in population health analytics at the Dalla Lana School of Public Health in Toronto.
“The stark reality is without this data, we have no sense of where we need to start to really invest in improving the system,” she said, pointing to the many challenges within health-care systems in Canada that require improvements, including long waits for care and health worker shortages.
“We need the data to be able to tell us exactly where to focus and how to make those changes… without that, we really are flying blind and we’re not able to actually make the impact that we all want to make.”
Why does Ottawa want provinces to agree to health data reform?
Calls to reform the way health information is gathered and shared are not new.
The urgency of the need for change has been highlighted by many studies and experts over the years, most recently by an expert advisory group tasked by the federal government to study the realities of Canada’s health data landscape and come up with advice for improvements.
After two years of work, which included reviewing more than 60 years of reports on improving health data use, the advisory group determined that health data is gathered, organized and managed poorly in Canada.
Hospitals, primary care providers such as family doctors and public health agencies all gather medical information differently and operate with different technologies, standards and electronic systems that don’t talk to one another, the advisory group found.
Meanwhile, the lack of a national approach to data has led to slower public health responses and contributed to excess mortality during and between major public health events, according to the expert panel’s final report, which was released in May 2022.
The COVID-19 pandemic “shone a spotlight on the real costs of these failures,” the report says, as it highlighted how a lack of national standards on the way information is collected and shared hindered Canada’s ability to accurately track the spread of the virus, respond quickly and track vaccine coverage.
Also, with pandemic lockdowns came an immediate need to virtualize all health services. But this proved a steep learning curve that also came with technology challenges and regulatory barriers regarding information sharing.
“Had a stronger health data foundation been in place, health inequities experienced during the pandemic would have been reduced and lives would have been saved,” the report said.
It was these stark realities, laid bare by the pandemic about how poorly Canada’s health information system worked, that prompted the federal government to create the expert advisory group in 2020 to look for advice on how to better respond to the ongoing COVID-19 outbreak and to be more prepared for future public health emergencies.
But now, Ottawa also wants to push for better data to ensure the $46.1 billion in new health funding it is offering to the provinces goes toward measures that will tangibly improve health services for Canadians, Trudeau said when announcing the deal Tuesday.
“Each (province and territory) will need to provide transparent information so that your health-care system is accountable and you can be sure that real improvements are being made,” he said.
“What gets measured gets done.”
To access a large portion of the new health funding, provinces and territories are being asked to sign an agreement with the federal government to improve how health information is collected, shared and used.
While some premiers have expressed willingness to accept the deal, official responses from the provinces have not yet been released.
The data agreements will be aimed at not only improving transparency in the way provinces are spending health dollars, but also improving the ability for Canadian patients to access their personal medical information and allow doctors and nurses to make more informed decisions about life-saving medical care for their patients, Health Minister Jean-Yves Duclos said Tuesday.
“Data saves lives,” he said.
“Better access to health information is essential for health workers to be able to provide safe and high-quality health care.”
But shifting Canada’s approach to gathering and sharing health information will be complex work and will require a number of changes in focus and technology, some experts say.
Improvements needed in sharing of medical records
Currently, nurses and doctors in most emergency departments in Canada are not able to immediately see what medication a patient may be on, they can’t access previous test results, nor can they access a patient’s medical history.
This lack of access to comprehensive patient data is true for all health-care providers across different levels of care and can make it hard for providers to know how best to treat them, Rosella said.
“A patient might seek care in a hospital, they might visit their pharmacist, they interact with their primary care physician, and that data is fragmented, and so right now it’s really hard to paint a picture of what’s happening across the care that they’re experiencing,” she said.
Better sharing of medical records so they can be accessed not only by providers, but also by patients themselves, would lead to better treatment decisions that could lead to better health outcomes.
“For an everyday patient, knowing that their data is going to be integrated and it’s going to be used in a way that will improve performance of the health system is something that would have a tangible impact,” Rosella said.
One of the biggest barriers to sharing medical records between individual health providers and even broader attempts to share health data across provinces is a lack of interoperability – the ability for data systems to be able to seamlessly interact and speak to each other.
Michael Green is the CEO of Canada Health Infoway, an independent, federally funded not-for-profit organization that has been working to accelerate the adoption of digital health solutions, such as electronic health records, across Canada.
To date, about 94 per cent of family doctors in Canada have adopted electronic medical records, but these records often lack the technical ability to link to hospital systems, Green explained in an interview with Global News.
“Some of this is due to the fact that the systems are from different manufacturers, and what we need to do is identify standards so they can communicate information in a standardized way,” he said.
But this can be challenging because, in some cases, the technical platforms purchased by health providers to capture and store medical information may have proprietary elements controlled by the companies that host the services which don’t allow them to easily share data or connect with other systems, Green noted.
In its May report, the expert advisory panel flagged interoperability as a key issue that Canada needs to tackle, pointing to the United States, which passed a regulatory ‘interoperability rule’ in 2020 requiring vendors that develop medical record platforms to ensure their data can be exchanged and shareable. This legislation explicitly directs vendors to prevent data blocking and provide solutions for data portability.
“Given that many vendors also operate in Canada, there is an opportunity for Canada to adopt legislation toward similar outcomes,” the panel report says.
How better health data could help address gaps in care
Collecting and sharing health data more will not only help individual patients — it will also help governments and health authorities see where gaps in care exist, says Kathleen Morris, vice president of research and analysis at the Canadian Institute for Health Information (CIHI).
This knowledge can help them to make more informed and targeted decisions to address those gaps, she said.
She used the example of mental health, which is a growing area of health concern, but treatment is offered within a “fragmented” system, she said.
Sometimes patients access mental health services through workplace employee assistance programs, others get help through schools, community-based programs, emergency departments and private or public psychiatric specialists.
“We don’t have a clear picture of who’s getting what care,” Morris said.
“The more that we could understand who’s using what services would help us get to the second level, which is – are (the services) accessible enough? Which ones are working the best for people or for which kinds of patients?”
Better data on these indicators could “create a better mental health and substance use system for patients across the country,” she said.
Better tracking of this kind of health data could also allow governments and health authorities to see where specific health services are available and where there may be shortages, Morris added.
For example, more than six million Canadians are without a family doctor in Canada – a problem that all governments have been grappling with – which has led to ER overcrowding and long wait times for care.
More information and data can help with better human resource planning to make sure the health system has the resources needed to provide timely and accessible care, Morris said.
“Better data on the number of health care providers that we have or each type (of provider) might be something that lets us plan for: if we have the right number of doctors or nurses or other health professionals? Are they located in the right places? How many of them are going to retire in the next five years? Are they moving? Are they going from one province to another? Are they switching from full-time to part-time?” she said.
“Understanding all of that actually can really help us make sure that the system has the right people in the right places.”
Improved integration and sharing of health data could also allow for better booking systems for services like specialist appointments or diagnostic scans, Green added.
Being able to book appointments online to see where care is available and whether certain specialists have long wait lists compared to others could help to eliminate unnecessary backlogs, he said.
“If you had a booking system like the airlines use, where you can select your own seat and so on, (and) make it much more flexible, then you can see where the resources are available and be more nimble in how you actually treat patients and where you direct people to get effective care.”
Health information that is more easily and securely sharable could also address burnout among many physicians and nurse practitioners when it comes to paperwork, Green said.
Last week, the Canadian Federation of Independent Business (CFIB) released a report showing doctors in Canada collectively spend approximately 18.5 million hours on unnecessary paperwork and administrative tasks each year, which would be the equivalent of 55.6 million patient visits annually.
“If they have (better data systems) available at their fingertips, it’s going to provide more time for them to treat patients and also a better work environment for them as well,” Green said.
– with files from Global News reporter Katherine Ward