White Coat, Black Art

Mammoth COVID-19 vaccine rollout highlights need for national vaccine registry, some experts say

The COVID-19 crisis and an ambitious vaccine campaign ahead highlight a gaping hole in Canada's health-care system where a cohesive, national vaccine registry should be, some public health experts say.

Fragmented system can lead to trouble, even with routine vaccinations

A syringe with a vaccine is seen ahead of trials by volunteers taking part in the country's human clinical trial for potential COVID-19 vaccines at the Wits RHI Shandukani Research Centre in Johannesburg, South Africa, Aug. 27, 2020. (Siphiwe Sibeko/Reuters)

The COVID-19 crisis and an ambitious vaccine campaign ahead highlight a gaping hole in Canada's health-care system where a cohesive, national vaccine registry should be, some public health experts say.

But because health care falls to the provinces and territories, no such system exists to help Canada's public health leaders identify gaps in uptake of routine vaccinations, let alone keep track of what will be the largest immunization campaign in our history.

"As with most things related to public health, it is a patchwork approach with technology ranging from the 19th century to the 21st century," said Ian Culbert, executive director of the Canadian Public Health Association.

Even for routine vaccinations, we don't have a particularly clear picture whether immunization rates are high enough to keep infections such as measles at bay, said Culbert.

"For many of the routine vaccine-preventable diseases, you need to have community immunity that's typically 85 to 95 per cent. We don't know that today."

The Public Health Agency of Canada surveys about 2,000 people every two years and uses those answers to project how many people are immunized, he said.

"But we don't have real data."

Ian Culbert, executive director of the Canadian Public Health Association, says 'we don't have real data' on how many people are actually immunized. (CBC)

The fundamental issue, said Culbert, is that "when public health systems are working and things are normal, no one pays any attention to them" — hence, politicians don't want to pay for things such as vaccine registry systems.

"It's much sexier for politicians to say they've invested to reduce the wait times for MRIs or hip replacements," he said. "And in normal times it's fine that individuals and parents are responsible for that yellow [immunization] card — it's never really put to the test."

Until something like a pandemic comes along.

'Like nothing we've experienced'

Now, with an imminent COVID-19 vaccination campaign — and a number of different vaccines likely to be offered — the problem of incomplete data has come sharply into focus, experts say.

"This vaccine rollout is going to be like nothing we've experienced," said Dr. Kumanan Wilson, a professor of medicine at the University of Ottawa and founder of the CANImmunize vaccine tracking digital platform, a startup company spun out of a research lab at the Ottawa Hospital, where Wilson is a senior scientist.

Unlike with other immunization campaigns, some of the COVID-19 vaccines being administered will require one dose, Wilson said. Others will require two, and the length of time between shots will vary depending on the specific vaccine.

Dr. Kumanan Wilson is a professor of medicine at the University of Ottawa and founder of the CANImmunize vaccine tracking app. (Dr. Kumanan Wilson)

"So we're absolutely going to have to be able to identify these vaccines digitally at the level of the individual," he said.

Another likely scenario is that, in time, data will show the immunity from one vaccine doesn't last as long as another.

"We would then need to be able to notify individuals that received that vaccine that it's time to get perhaps another vaccine."

Asked about the need for a national registry, especially in light of the COVID crisis, the Public Health Agency of Canada told CBC Radio in an email that immunization programs are run by the provinces and territories, and that its survey method of monitoring vaccine uptake "allows for consistent data collection across the country."

"Moreover, surveys collect information that is not captured by registries, such as socio-demographic data, knowledge, attitudes and beliefs and reasons for non-vaccination," it said.

"When COVID-19 vaccination begins, PHAC is planning to use data from [provincial and territorial] registries and national surveys to monitor vaccine uptake."

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Following up on vaccinations will be particularly important for groups that are most at risk of getting a severe form of COVID-19, said Dr. Joan Robinson, a pediatrician and director of the University of Alberta department of pediatrics' division of pediatric infectious diseases in Edmonton.

"For example, the elderly, maybe we'll start out with a vaccine they don't respond to very well, and then we'll get a far better vaccine, and it will become logical to give them a different vaccine," said Robinson. "Wouldn't it be great to actually have records, so that we have very efficient use of vaccines?"

Unfortunately, provincial and territorial health-care systems aren't designed for that, with the current disconnected collection of tracking systems.

Siloed systems

Creating a national vaccine registry isn't as simple as connecting what's already in use at the provincial or territorial level.

The systems that do exist vary considerably in their sophistication and in who is compelled to report into them, said Culbert. 

Eight use, to varying degrees, an IBM-made vaccine registry called Panorama: British Columbia, Yukon, Saskatchewan, Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia. But even these are siloed versions of the same system that don't really speak to one another.

Add to that the complication of the number of places that administer vaccines, he said. Some provinces may require their local public health units to share vaccine data but not the thousands of family practitioners whose offices also administer vaccines, for example.

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What's needed is for all vaccine data to reach the federal Canadian Institute for Health Information, said Culbert.

"But reporting of all health data is voluntary, and it is through negotiated arrangements with all provinces and territories," he said.

He said most Canadians aren't aware until they move from one province to another, or their family doctor retires, that there's no one looking after this information on their behalf.

"I can attest to that by the number of calls we get when there's an outbreak of measles," Culbert said.

When a family doctor retires, it's likely that any health records they held will no longer be accessible, said Culbert. "So you end up having to revaccinate people, which is a waste of resources."

Lost records

That's exactly what happened in Diana Rickard Coote's family.

"We had a really great pediatrician and loved her and then she left the practice. We couldn't find her. She took all of our records," said the Ottawa mom of two.

Her youngest son, Evan, now 11, ended up getting suspension notices in Grades 4, 5 and 6 because of missing vaccine records — and actually did get suspended for a few days the first year while they searched in vain for the boys' former doctor. (In Ontario, children are required to be vaccinated against certain diseases in order to attend school, unless their parents go through steps to receive an exemption.)

Diana Rickard Coote, shown with sons Evan, 11, and Casey, 14, said her son Evan got suspended from school several times because of missing vaccination records that got lost when his pediatrician left her practice. (Submitted by Diana Rickard Coote )

With no records, they ended up having another caregiver re-do vaccinations they knew he'd had previously. "We had no other choice," Coote said.

Robinson says that while it's rarely harmful to receive an extra vaccine, it is a waste of time and money. If your physician, nurse practitioner and pharmacist could look up that information, that would be considerably more efficient and less error-prone, she said. 

Need to track adult immunizations

Wilson said one major issue in the COVID context is that existing systems are designed to track children's routine immunizations.

"They really aren't focused on tracking vaccination in adults ... and this vaccine is going to primarily be provided to adult older Canadians. That'll be the initial target population."

Toronto family physician and vaccine researcher Dr. Iris Gorfinkel said difficulties executing a wider seasonal flu vaccine program this fall show why a comprehensive and higher tech solution is needed for tracking who has had what vaccines.

Dr. Iris Gorfinkel is a Toronto-based family physician.
Dr. Iris Gorfinkel says using barcodes on vaccines — along with barcodes assigned to individual patients — should automatically populate a patient's own electronic health record. (Craig Chivers/CBC)

She told Dr. Brian Goldman, host of CBC Radio's White Coat, Black Art, the technical foundation has already been laid to make this happen, given a system already established that assigns distinct barcodes to individual vaccine doses, so they can be scanned at the time they're administered and associated with the person who receives the shot. 

"Virtually every single vaccine has a … barcode on it. And those barcodes came because public health met with infectious disease [experts], met with IT people. And this cost a tremendous amount of money at the time when it was developed."

Toronto family doctor and vaccine researcher Dr. Iris Gorfinkel talks to Dr. Brian Goldman on White Coat, Black Art about how this year's flu season is a "dress rehearsal" for the rollout of COVID-19 vaccines. She says the current gaps in the system point to the need for a national vaccine registry.

That system could be used to automatically populate a patient's own electronic health record, that of the local health unit and the provincial or territorial database, and in turn, be shared federally, said Gorfinkel. And unlike during this year's outsized flu shot campaign — when many doctors' offices and pharmacies ran short — the information could be used to determine the volume of vaccines clinics need, she said.

Identifying at-risk populations

Culbert said that kind of data is also essential for spotting areas of need where people are at-risk because they haven't received their COVID-19 vaccine, perhaps because they can't get to a daytime appointment, giving public health the opportunity to intervene.

He said a crisis comes along every decade or so — the SARS epidemic, for example — that "shines light on a public health system that is grossly underfunded compared to acute care in our country."

We do reasonably well at fixing people once they're sick, but less well at keeping them healthy in the first place, said Culbert.

The need to have reporting on a set time frame, that's not negotiable. That is absolutely critical.- Ian Culbert, Canadian Public Health Association

Just as SARS led to the establishment of the Public Health Agency of Canada, Culbert said, he hopes the pandemic will also prompt meaningful change and open some line of communication for timely vaccine reporting from the provinces and territories.

"If nothing else comes out of this, the need to have reporting on a set time frame, that's not negotiable. That is absolutely critical." 

Written by Brandie Weikle. Dr. Iris Gorfinkel interview produced by Dawna Dingwall.

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