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data gap

As preventable illnesses make a comeback, a patchwork of electronic records hides the scope of the problem – and health agencies are missing key tools for strengthening the immunity of Canadians

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Six-month-old Josie gets the Infanrix hexa vaccine from Dr. Vesna Kovacevic at Vancouver's Mid-Main Community Health Centre. Mother Toni Hourston-Mooney has been weighing the risk of taking Josie to public places since the news of a measles outbreak in the Vancouver area this year.Rafal Gerszak/The Globe and Mail

When health officials confirmed several cases of measles at three Vancouver schools last month, they rushed to check that the students had been immunized.

Vancouver Coastal Health, the health authority for the region, was able to determine the vaccination status of most students at the schools almost immediately. But for about another 20 per cent, it had no records, and it took a week to track them down. Over that period, the health authority confirmed about a dozen more cases and declared an outbreak. The delay didn’t necessarily worsen the outbreak, but it did complicate the response, making it more difficult for public-health workers to determine which students might be most at risk of catching the highly contagious disease.

In British Columbia, as in every Canadian province and territory except Ontario and New Brunswick, parents are not required to provide schools with their children’s immunization records – just one immunization data gap among many in a country seeing a resurgence of diseases that can be thwarted with vaccines.

As outbreaks become more common, calls to fix Canada’s patchwork system of immunization record-keeping are growing. The gaps are putting Canadians at risk. Comprehensive electronic registries, experts say, are key to preventing the spread of diseases such as measles, diphtheria and whooping cough. “Strengthening that system to allow us to make sure we have immunization records for every child would be a benefit,” said Réka Gustafson, a medical health officer with Vancouver Coastal, at a media briefing in late February. “It would limit the disruption to families. It would limit the amount of health-care resources we are spending to try to confirm immunization status. So absolutely, there are improvements to be made.”

B.C. Health Minister Adrian Dix last month pledged that, by September, all parents in the province will be required to provide immunization records before enrolling their children in school. Public-health leaders applauded the move. This week, he said the province would launched a measles immunization catch-up drive from April to June to help bring immunization coverage for school-aged children closer to 95 per cent.

The magic number is 95

Vaccines are most effective when they provide “herd immunity,” which occurs when immunization levels are high enough that even people who have not been vaccinated – including babies and people who can’t be vaccinated for medical reasons – have some protection against disease because outbreaks are less likely to occur. For measles, that level is 95 per cent.

Children who have received two doses of a measles vaccine are considered almost completely immune to the disease. If immunized children catch measles, they are less likely to experience complications such as pneumonia or encephalitis. The virus spreads when people cough or sneeze and can survive in airborne droplets for several hours, making it highly contagious – especially in schools and other places where people may be in close quarters.

In Canada, measles-vaccine coverage for two-year-olds sits at 89 per cent, according to the 2015 Childhood National Immunization Coverage Survey, the results of which were released last year. (Coverage was largely unchanged from previous surveys in 2011 and 2013.) But that number, and others in the survey, is just an estimate.

Government agencies have conducted the survey every two years since 1994. It involves questionnaires and telephone interviews and, if parents consent, cross-checking those results with data from doctors and nurses who administer the vaccines. The resulting data have limitations, says a government website, including a low response rate and inaccurate self-reporting, “usually because immunization cards or booklets have been lost for children [and] adult memory is not as exact or as complete as a medical record.”

But for now, it’s the closest thing Canada has to a national picture of immunization coverage – and that picture shows Canada is not meeting any of its vaccination coverage goals, which were updated in 2017. Coverage lags that of other wealthy countries, including the United States and Australia, according to estimates from the Organisation for Economic Co-operation and Development.

The Public Health Agency of Canada says vaccination rates in Canada are “fairly high,” maintaining that national surveys are likely to underestimate coverage. But that doesn’t mean there is no cause for concern.

Measles was officially eliminated in Canada in 1998. Globally, though, the disease is seeing a resurgence, due in part to people choosing not to vaccinate themselves or their children.

So-called “anti-vaxxers” – people who shun vaccines for many reasons, including a discredited theory linking them to autism – are a minority in Canada; the most recent national immunization survey found the vast majority of parents – 97 per cent – agreed that childhood vaccines are safe and effective.

But a large group – 66 per cent – had concerns about potential side effects, and 15 per cent said they believed practices such as chiropractic and naturopathy can replace vaccines, which is not true. Those respondents may be among the “vaccine-hesitant” – people who have concerns or misgivings about vaccines.

The World Health Organization included vaccine hesitancy on its list of 10 threats to global health in 2019, saying it threatened to reverse decades of progress in tackling vaccine-preventable diseases.

Health officials worry misinformation is making matters worse. This month, the American Academy of Pediatrics, for example, wrote to major technology companies, including Facebook, to ask for help in ensuring parents have access to “scientific content from verified sources” about vaccination. In a March 12 statement, Canada’s chief public health officer, Theresa Tam, said health-care providers are “on the front lines of this battle between truth and misinformation” and urged them to take time to answer questions from concerned parents.

Staging a comeback

In the first two months of 2019, there were 206 cases of measles in 11 states, according to the U.S. Centers for Disease Control and Prevention. (The United States declared measles eliminated in 2000.)

There have been multiple outbreaks in the United States in recent years, in part because of travel to countries grappling with their own outbreaks. Similar patterns are playing out in Canada. In 2014, B.C. had 343 confirmed cases of measles, with most of those linked to a religious community that objects to vaccination. The community was exposed to travellers to the Netherlands, where a large outbreak had begun in 2013. Media reports have linked the current outbreak in B.C. to a family’s trip to Vietnam.

Given the global context, experts say Canada should not be complacent. Ninety-eight countries reported more cases of measles in 2018 than in 2017, with Ukraine, the Philippines and Brazil recording the largest increases, according to a UNICEF report released last month. In Ukraine alone, there were 35,120 cases of measles last year, with another 24,042 people infected in the first two months of 2019.

“It’s a little bit pathetic that we really have no clue what percentage of [Canadian] children are immunized at any given age,” said Joan Robinson, a member of the infectious diseases and immunization committee of the Canadian Paediatric Society and author of a July, 2018, position statement on how to improve childhood immunization rates.

“If you were to, say, have a measles outbreak in a school, it would actually take a fair bit of work to sort out who had been immunized and who hadn’t,” she added.

The Canadian Paediatric Society has made seven recommendations to improve immunization rates, including requiring provinces and territories to set up electronic registries that are readily searchable by health-care providers.

But such a call for accessible databases isn’t new. In 1998, Health Canada sponsored a conference at which participants – doctors, privacy experts and federal, provincial and local health officials – agreed that Canada should establish comprehensive immunization registries in all provinces and territories within five years. At the time, only Prince Edward Island, Ontario and Manitoba had such systems in place.

Currently, every jurisdiction except New Brunswick and Nunavut has an electronic registry. In January, New Brunswick, which uses both paper and electronic records to monitor vaccinations, announced plans to merge those records into a central database over the next four years. Nunavut – hampered by limited connectivity in many communities – is also implementing a territorywide electronic medical-record system that will include immunization records.

But provinces follow different immunization schedules and have different systems for providing vaccinations. In Alberta, public-health nurses administer childhood vaccines; in other provinces, including Manitoba, Quebec and Nova Scotia, both family doctors and public-health nurses provide vaccines. The time frame from immunization to data entry varies from immediate to days or weeks. And registries operate within provincial boundaries, so when families move or travel, their records don’t go with them.

That makes it difficult to compare coverage between jurisdictions or to pinpoint pockets where coverage might be low.

“The ideal registry would be: Every time an individual receives a vaccine, that information is entered into the registry – what the vaccine was, the lot number, when it was given and who gave it,” said Scott Halperin, director of the Canadian Center for Vaccinology at Dalhousie University.

"All that information would be there, and it would be portable and accessible. So if a vaccine was given by a doctor in Halifax in his private practice and then that child six months later presents to an emergency department, if it was a tetanus vaccine, the doctor in that emergency department can access that information – say, this person has had a tetanus vaccine, I don’t need to give it,” Dr. Halperin added.

Currently, that doesn’t happen. In Nova Scotia, researchers found it can take as many as four data sources to get a complete record of a child’s immunization status, Dr. Halperin said.

Registries could also help automate reminders and scheduling, reaching parents who may have missed vaccinations inadvertently. (The CANImmunize app allows users to track vaccinations but, at this point, is only linked to public-health reporting in some communities.)

Toni Hourston-Mooney says she would welcome any measures that would encourage parents to seek vaccination for their kids.

Since the news of the measles outbreak in Vancouver, she and her husband, parents of a six-month-old daughter, have found themselves weighing the risk of taking her to public places. They’re considering a vacation but are wary of spending time in Vancouver International Airport, one of many places, including a Whistler spa and a Toys "R" Us store in Richmond, where Vancouver Coastal has said people may have been exposed to measles.

Sometimes, Ms. Hourston-Mooney, a nurse, weighs in on conversations online or at gatherings to correct erroneous ideas, such as a belief that homeopathic remedies can replace vaccines.

“There is a lot of misinformation out there,” she said.

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'There is a lot of misinformation out there' about vaccinations, says nurse Toni Hourston-Mooney, with six-month-old Josie.Rafal Gerszak/The Globe and Mail

National registry already years in the making

There have been steps toward a national immunization system.

The biggest came more than a decade ago, after Toronto’s SARS outbreak in 2003. (There were 438 cases reported, with 44 deaths, all in Toronto). A federal report on the crisis found major shortcomings in surveillance, including files maintained on paper charts with colour-coded sticky notes.

Recommendations from that report included a national immunization strategy that would include a consolidated information system.

B.C. took the lead in developing the system, called Panorama and envisioned as providing “cradle-to-grave” monitoring of vaccines for people across the country.

The rollout has proved challenging. Some provinces, including Alberta, opted out because they had already invested in other technology. A 2014 “value for money” audit by the Auditor-General of Ontario found Panorama in that province was over budget and held limited data, raising concerns it would be no better than the system it was replacing. A 2015 report by the Auditor-General of B.C. found the system was “five years late, incomplete, [and] riddled with deficiencies.”

Canada Health Infoway, a federal agency set up to develop Panorama and other health technologies, says Panorama is running in eight jurisdictions – B.C., Yukon, Saskatchewan, Manitoba, Ontario, Quebec, Nova Scotia and New Brunswick – that together represent more than 86 per cent of the Canadian population. The agency adds that work is under way to share vaccine information collected from various sources, including pharmacists and doctors who administer vaccines.

But a mix of delivery models and other challenges, including inconsistencies in when data is collected, mean a seamless national registry does not exist.

“We don’t know who is immunized and who is not,” said Dr. Halperin, who is also a co-principal investigator with a Canadian immunization-monitoring program. “And we don’t know what the gaps are.”

Even if registries exist, they may not be readily accessible to, say, doctors or nurses with a two-year-old patient in their office.

“This is part of what is so frustrating,” said Eric Cadesky, a family doctor and the president of Doctors of BC. “We track [vaccines] in our system. But our system cannot talk to any other systems. Our [electronic medical record, or EMR] does not connect with the hospital, it does not connect with other EMRs, it doesn’t even connect with other people in the community with the same record. So if someone gets a vaccine in one place, it won’t tell anybody else that that has been given.”

Watch: Dr. Natasha Crowcroft of Public Health Ontario discusses the importance of getting vaccinated for measles and other diseases and offers some reliable resources for information about measles and vaccinations.

Thirteen solitudes

While experts continue to call for a national immunization registry, health care is primarily a provincial and territorial responsibility.

The federal government could nudge provinces toward a common immunization schedule through, for example, cost-sharing agreements for vaccines, says Monika Naus, the medical director of communicable diseases and immunization service at the BC Centre for Disease Control.

For now, Dr. Naus sees an increased focus on linking immunization data in existing systems, such as the electronic medical records used by many doctors, to provincial registries.

In Ontario, for example, the former, Liberal government passed legislation that would have required doctors to report immunizations to public-health offices. After doctors raised concerns about practical issues – including the lack of real-time electronic reporting capacity – and complained about a lack of consultation, then-premier-elect Doug Ford put the requirement on hold in June. Work is now under way to address the issues raised by physicians.

But despite the cost, complexity and privacy concerns, there’s a desire to move from paper to digital records that can be shared and readily viewed by health-care providers.

“Immunization is supposed to protect you for a lifetime,” Dr. Naus said. “It should be part of the record.”

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The gaps so far

The Globe and Mail has uncovered myriad data deficits, culled from dozens of interviews, research reports, government documents, international searches and feedback from our own newsroom. Here’s a list of what we found, which we’ll be adding to as the investigation continues.

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* By data gap, we mean areas at the national level in which data are not collected or readily accessible. These could be areas where there is no ability to compare across provinces or cities, where the existing information is years out of date, published infrequently or not comparable with prior years.

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