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Building trust

Dr. Michelle Driedger is helping health officials make better decisions on issues ranging from pandemic preparations to the use of cancer screening tests

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Pandemic. It's not a word that often comes up in the course of daily discussion.

But that changed in 2009 with the emergence of the H1N1 influenza outbreak. For a few months in the spring and summer of that year, the word pandemic dominated the conversations of Canadians from coast to coast. That was especially true in Manitoba, one of the provinces hardest hit by the H1N1 outbreak.

The virus first caught local attention in March of that year when Mexico reported that as many as 150 people had been killed by the virulent virus then making its way across North America. By May 4, Manitoba was reporting its first officially diagnosed case of H1N1. By fall, more than 800 cases would be diagnosed with H1N1 influenza in what would become one of the province's most significant health emergencies in recent memory.

Manitoba was prepared for a pandemic. Public health officials in Canada had long been preparing for one, knowing it would only be a matter of time before one would strike. And by summer, the World Health Organization declared the H1N1 outbreak to be the pandemic everyone was waiting for. Yet despite all the planning and good work, things did not always go as smoothly as they could have. Governments ordered massive amounts of H1N1 vaccine, unsure if pharmaceutical companies could develop the product and create millions of doses in time. Once the vaccine was ready, many people were reluctant to get immunized, uncertain about the possible side-effects.

The official word from government was that people should get vaccinated. It was safe. But in the age of the Internet and social media, the public had unprecedented access to a vast amount of information - some accurate and some not - on which to base decisions.

Compounding matters, once the vaccine was ready, not enough doses were available to immunize everyone. The rollout took several weeks longer than planned. Public health officials had to decide who would be vaccinated first, based on risk.

In Manitoba, people of Aboriginal ancestry were among those prioritized for immunization, and many members of that community questioned why they were put first in line. Conspiracy theories circulated. Confusion and fear reigned. In the end, hundreds of thousands of Manitobans were vaccinated, and by spring of the following year, the pandemic faded as quickly as it had surfaced.

For all intents and purposes, the public health-care system passed the test posed by H1N1, but by no means did it do so with flying colours. Many of the challenges, though ultimately overcome, were largely caused by the swirling uncertainty caused by a fluid, unfolding situation. The public was not alone in being confused. Even health-care experts - epidemiologists, intensive care physicians, pathologists - struggled to understand the full breadth of the situation.

In its aftermath, the confusion that surrounded the H1N1 pandemic has proven to be fertile ground for Dr. Michelle Driedger, one of Canada's leading experts in the emerging field of knowledge translation and risk communication.

As the Tier II Canada Research Chair in Environment and Health Risk Communication in the Department of Community Health Sciences at the University of Manitoba's Faculty of Medicine, Driedger examines the hard choices health officials make for the common good and how those decisions are communicated throughout the entire system, including to the general public. It's the kind of work that is critically important to building an effective and efficient health-care system, especially during times of tight budgets.

"I look at situations where the evidence hasn't achieved a level where it can provide any definitive answers, or even if we had all the available evidence in place, it still wouldn't necessarily address all of the issues," she explains.

In addition to looking into the issues surrounding pandemic preparation, Driedger is also conducting studies into the value of cancer screening, choices in cancer drug funding, and the controversy surrounding the experimental liberation therapy for people with multiple sclerosis.

Much of her research involves examining how policy decisions are made in situations where a complete understanding of the risks is impossible or where the available data is conflicting.

"PSA testing is a really good example," she says, referring to the prostate antigen test sometimes used to screen for prostate cancer.

"Despite using the gold standard of study designs, research hasn't found consistent outcomes for decisionmakers to say, 'Yes, this test should be administered at age X and its positive results warrant further tests, like a biopsy to test for cancer.' In fact, many clinicians believe that the PSA test can cause men more harm than benefit."

It's just one of many dilemmas faced by decision-makers at every level in the health system, she adds. They're trying to make the best decisions based on the most credible data available.

"It's dealing with this nebulous context of how do you try to make good, evidence-informed policy decisions when even the best available evidence can't cough up a more definitive answer in terms of where the direction of the policy should go," she says. "I'm a social scientist. I look at the mess of the uncertainty and try to find where there are patterns or markers that can help us understand what is going on, but the uncertainty isn't going to go away completely."

Driedger's focus, however, isn't only on how policy-makers reach their decisions. She's also concerned about how the public receives the message so the decisions have better outcomes. Among the questions she asks are: Does the public feel the decision is fair? Do they understand it? Do they even trust those making the decision?

In fact, the successful implementation of any health-related decision often boils down to a matter of trust, she says. It is the oil that allows the health-care system engine to work smoothly.

But when a second opinion is only a mouse click away, it's now more challenging than ever for policy-makers, public health experts, physicians and many other health-care workers to build and maintain the public's confidence in the system.

Her most recently completed work on the H1N1 pandemic specifically examines how uncertainty can undermine this relationship.

Meeting with focus groups, comprised of general population residents in Edmonton, Toronto and Winnipeg, as well as First Nations and Métis across Manitoba, she tried to create a more concise picture of how risks are managed and communicated during a pandemic and what potential problems can arise during highly uncertain and constantly changing situations.

Driedger didn't work alone. It was a team effort, working with Dr. Cindy Jardine at the University of Alberta, Dr. Jennifer Keelan at the University of Toronto, Dr. Chris Furgal at Trent University and Dr. Judith Bartlett at the University of Manitoba.

They not only interviewed members of the general public, they talked to public health officials, frontline health-care workers, epidemiologists and primary health-care providers, like family physicians. It was a pandemic post-mortem of sorts.

"The idea being that we learn from what worked and what didn't so we don't repeat the same mistakes again," she says.

From a global public health perspective, the pandemic was better handled than the Severe Acute Respiratory Syndrome (SARS) outbreak in Toronto in 2004. In fact, it was a public health success in many ways, says Driedger. "Public health had been preparing even before SARS happened for the next infectious disease outbreak on a global level," she says. "A lot of plans were in place, but even though all those things were in place, there were hiccups."

Certainly, the health-care system faced its challenges, especially in formulating its message about the risks concerning the vaccine. Vaccinating hundreds of thousands of Manitobans was an enormous undertaking, and the system did rise to the challenge. But the numbers could have been better. The province's H1N1 vaccination rate in Manitoba was about 37 per cent for the general public and 61 per cent for First Nations.

Despite nearly doubling the immunization rate of the general population, several First Nations and Métis members of focus groups told Driedger that they had struggled with the decision. Many at first wondered why they were bumped to the front of the line. They felt like guinea pigs, she heard.

"Some of the reasons that Manitoba Health chose to do what it did was partially based on the fact that during the first wave of illness, First Nations people were harder hit," she says.

But that message didn't always reach its intended audience, she adds. Even when it did, those who heard it had reason to be somewhat skeptical.

"When you couple that with postcolonial history and a substantial degree of mistrust toward the health-care system and government, some were suspicious."

Health officials had these communities' best interests in mind, she says. And the decisions were based on several factors, including social determinants of health, such as access to clean water and primary health care in remote communities, as well as higher rates of diabetes and other chronic illnesses that affected members of both groups.

But what she heard from focus groups was that they often had many other competing priorities that were higher on the list. Putting food on the table took priority over getting a vaccine, she says.

Still, many did get vaccinated - and they did so for a variety of reasons.

"Some got it because they had underlying health conditions or their doctor encouraged them to get it," she says. "In other cases, they didn't want to get it, but the matriarch of the family said, 'We're all going to get it,' and you did what your elder told you to do."

Those who chose not to get vaccinated also had equally diverse reasons, she says.

Regardless of ethnic and socioeconomic lines, some didn't view H1N1 as a risk to themselves and their families so they didn't think it was worth the trouble. Others believed they were better off not getting the vaccine because it may be more harmful than the virus itself.

This relatively small segment of the population is the least likely to be convinced, no matter the evidence. "If you have people with fundamental suspicions about vaccination, it doesn't matter what kind of message you come forward with," she says. "You're not likely to change that person's behaviour and decisions."

Yet many more simply weren't sure what to do, she discovered.

Although official health websites like the Centers for Disease Control in the United States and Manitoba Health provided information based on the best scientific evidence available, some focus group participants stated these sources seemed one-sided and didn't address concerns about the vaccine's safety that they were learning about from other sources, especially on the Internet.

One website that came up often in focus group discussions was www.mercola.com, which promotes the opinions of Dr. Joseph Mercola, who practices alternative medicine in the U.S. He recommended not getting the H1N1 vaccine, claiming it was potentially dangerous - even though he had little credible scientific evidence on which to base his claim.

"But from the perspective of people who looked at a website like Dr. Mercola's, it was at least showing two sides of the story," says Driedger. "It was showing pros and cons of the vaccinations for the H1N1 pandemic."

For many, this two-sided approach appeared to have merit and could appear to be equally as credible as government public health websites.

"What we know from risk communication research is that, generally, by just providing only one side - like why vaccinations are good and not addressing concerns about the risks - people may feel they're not being told the whole story."

"If you have that information void from credible sources, people will fill that by looking elsewhere, so it's really important from a public health perspective to start dedicating more time to at least being sensitive to where people's concerns may be coming from and at least having an official response about why there are some risks," says Driedger.

Furthermore, much of the public health campaign message to get vaccinated took place while the vaccine was being developed. People had weeks to make their decision, and many people didn't see their neighbours falling ill. As a result, they didn't necessarily see H1N1 to be much of a threat to their health. It was out of sight, out of mind for weeks.

But Driedger says that changed in the fall when a 13-year-old hockey player in Toronto fell ill and died in a matter of days - about the same time the vaccination campaign was about to start. "That created a panic rush so there was huge demand for a vaccine with insufficient supply, and because decision-makers knew there would be insufficient supply for reasons beyond their control, they had to come up with a sequencing program for how they were going to distribute it."

For frontline workers, this presented new challenges. They were faced with explaining why concerned parents would have to wait weeks for their children to be vaccinated while others were getting vaccinated.

Driedger says many of the problems were understandable, given the nature of the situation. If anything, the H1N1 pandemic turned out to be a good learning experience for the health-care system, she says. "H1N1 was the first infectious outbreak that really played out in a web 2.0 platform, and I don't think a lot of the agencies in Canada were prepared for the complexities associated with delivering a public health message in this type of environment with many competing perspectives," she says. "And you can't easily deal with these kinds of messaging problems in the midst of a pandemic."

The system can do better. It has to, she says.

"The thing that scares some health officials is that most people think we did handle it. But what happens if it had been 50 per cent worse?" she says. "The system was already under pressure. It could have very easily have been overwhelmed. Within early days, it was at 60 to 70 per cent of capacity."

What has become clear from the research is the health-care system needs to build better relationships through increased dialogue with all stakeholders through the media, on the web and in communities well in advance of another pandemic or any other potentially complex and challenging health-care issue.

"We have to be highly responsive and not just to the agreed facts and policy, but also to information that is fundamentally wrong," she says. "We need to be ready to identify why it's wrong, but in a respectful way."

Although the people who, for example, have a core belief that vaccination is harmful may never be convinced, there are many others who are looking to make the best decisions they can for themselves and their families.

"It's all about the people in the middle who might be confused, who generally want to make good decisions, but they don't see that they're being given all of the information from the sources they trust, and they look elsewhere."

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