May 1, 2019

How does research make better policy? Public policy and the dance of democracy

In theory, research should take the guesswork out of policy-making. Scientific data can help lawmakers understand the pros and cons of all policy options when they look to solve complicated problems like children’s health, drug plans and concussions. But often, other factors are in play by the time legislation gets passed.

It’s November 7, 2018, in Ottawa, on Parliament Hill. Dr. Amy Metcalfe, PhD, from UCalgary's Cumming School of Medicine, sits among senators in an open caucus meeting on children’s health, preparing to provide her recommendations.  

Metcalfe listens as the co-chair outlines the problems facing Canadian kids: suicide, for example, is the second-leading cause of death among Canadian young people. One in five children live in poverty. Canada is the eighth-most prosperous nation in the world, yet we have this inexplicable gap between the economic well-being of the nation and that of our children.

The co-chair looks at Metcalfe and the other experts around the table. She asks, "how can we improve the well-being of our children?"

Research shaping policy

Metcalfe, an assistant professor in the departments of Obstetrics and Gynecology, Medicine and Community Health Sciences, didn’t simply appear in Ottawa one day to speak with lawmakers. Her presentation was the culmination of an arduous research journey that started when a non-profit organization called Children First Canada (CFC) commissioned UCalgary’s O’Brien Institute for Public Health to write Raising Canada: A report on children in Canada, their health and wellbeing.

 The report describes the demographic trends of Canadian children populations, and the state of children’s physical and mental health. Its goal is to provide a summary of existing data on children’s health in Canada, thus providing CFC and policy-makers with a comprehensive overview of children’s well-being. Raising Canada explains why Canada needs to take action on this issue. It offers an evidence-based foundation on which policy can be built, revealing to lawmakers the current state of affairs.

The state of children’s health: a wake-up call

And this state of affairs is eye-opening.

“Even as a researcher in child and maternal health, I found some of the statistics quite shocking, particularly in the area of mental health,” says Metcalfe. “The report clearly shows that there is a lot of room for improvement in children’s health.”

When she spoke at the caucus meeting, Metcalfe outlined key findings from the report, noting that many of the discouraging outcomes were in fact preventable. She told the senators about high rates of unintentional injuries, a suicide rate almost unmatched internationally, alarming rates of mental health disorders and cyberbullying, children entering elementary school without the necessary educational foundation, and more.

Children in silhouette

Canadian children aren't as healthy as we would expect, says a recent report.

 

Facts from the Raising Canada report*

  • About one in five Canadian children lives in poverty and/or in low-income households
  • More than one in three Indigenous children live in poverty
  • Over one million children in Canada live in low-income housing
  • One in 10 children experience moderate or severe food insecurity (the inability to obtain adequate food, due to social and economic factors)
  • One in three Canadian adults report they experienced some form of abuse before turning 16
  • In 2012, suicide was the second leading cause of death among boys and girls (1-17yr)
  • In 2015, Canada was one of the five countries with the highest teenage suicide rates, with a suicide rate of over 10 per 100,000 teens
  • 11% of Canadian youth (age 15-24) have experienced depression in their lifetime

* The statistics above are from the Raising Canada report, but they originate from a variety of sources noted within the report.

 

Health care policy: no clear path to success

Despite providing a neutral voice to help lawmakers see their options, and the various strengths and weaknesses of each option, Metcalfe says there's no guarantee what the specific outcomes around children’s health policy will be. “The report is certainly impactful,” says Metcalfe. “But it’s also overwhelming. You see suicide ideation beside bullying and homelessness; it’s hard for governments to know what to do and how. Realistically, there isn’t one comprehensive strategy that will take care of all of these issues.”

The federal government is just starting to determine how to deal with the problems outlined in the report, so it’s difficult to tell what sort of policies Raising Canada will inform.

"With a complex issue like this, there are lots of options," says Metcalfe. "This sort of objectivity helps you get to a better outcome."

Why is policy-making like sausage-making?

Solid evidence doesn’t necessarily guarantee the most logical result. The process of creating public health-care policy is shaped by many conflicting voices: those of advocates, stakeholders and a political discourse that shifts with every Twittery breeze.

Dr. Fiona Clement, PhD, an associate professor in the Department of Community Health Sciences, says the health-care policy process can feel like a sausage grinder. “All these great ideas flow into the machine, they get ground up and then then you have a completely new product coming out at the end,” she says. “Inside that grinder is a lot of translation, interpretation, discussion and compromise.”

 

Gears and a fork

Policy-making involves taking a wide variety of factors into account.

National pharmacare: the context

Clement studies another lag in Canada’s health care system — a lack of national funding for pharmaceuticals. “We are the only westernized nation that has a social health-care system that excludes pharmaceutical drugs from its coverage,” says Clement.

The need for pharmacare — a system of health insurance coverage that provides the public with the prescription drugs they require — is clear. A 2018 study in CMAJ Open shows that about 730,000 Canadians forego basic needs like food and heating to pay for prescriptions. And it’s often the most vulnerable who make these sacrifices — those with poorer health or lower incomes, women and younger adults, Indigenous Peoples, and those without drug insurance.

Even if you have private drug coverage, you have deductibles, co-payments and annual maximums. Add on the patchwork of provincial drug-coverage programs and you get a system that is at best confusing and at worst inadequate.

The federal case for pharmacare: evidence required

In 2018, the government established the Advisory Council on the Implementation of National Pharmacare to offer advice on how best to implement a plan.

And there is demand for pharmacare. According to a March, 2018 Nanos Research poll, nearly 75% of Canadians support or somewhat support a national public insurance plan to cover prescription drugs. The Advisory Council’s goal is to create a program that is affordable for individuals, employers and governments.

Pharmacare might sound like a political slam dunk for the federal government, but it’s not. Canadians are lukewarm on handing the responsibility of pharmacare to bureaucrats and lawmakers — only about four in ten Canadians feel a national pharmacare program run by the federal government would do a very good or good job at giving access to the best medicine.

From coffee to clarity: building a pharmacare report

That’s where Clement comes in. As director of the Health Technology Assessment Unit at the O’Brien Institute, she helps decision-makers develop public policy based on reliable data.

“I want to live in a world where every social spend is based on evidence,” she says. “The reality of a social system like ours is that when you spend money in one area you can’t spend it somewhere else.”

The idea to write a report that would nurture an evidence-based approach to pharmacare came to Clement over coffee with a colleague from the University of British Columbia. “We were griping about how no one has set out a reasonable suite of pharmacare options," she says. "And we eventually realized we should do it ourselves.” Normally, Clement’s policy work happens in response to a call for research, but in this case she decided to take a proactive approach, getting to work on a report that would eventually inform federal policy.

Analyzing the pharmacare options

Clement knew there was a need for options that took economics into account. She knew that Alberta lawmakers wanted to do more with the money they devote to pharmaceuticals. And she knew the federal Standing Committee on Health recommended a universal single-payer public prescription system, where taxes would cover the cost of essential medications for all Canadians.

“That’s a very expensive option,” says Clement. “It’s like hitting a problem with a massive hammer and maybe it’s not the best tool.”

So Clement proceeded to write a report outlining a full suite of options for pharmacare. The result was “Assessing the Options for Pharmacare Reform in Canada,” co-authored by Michael Law and Thy Dinh.

Detailing the options: a labour of facts

Building the report was an experience only a health-science researcher could relish. “We had several deep-thinking days where we locked ourselves in a room and we covered all the white boards,” says Clement. “Eventually, steam was coming out our ears, but those are the days you live for as a health policy researcher.”

After creating about 55 drafts, Clement’s team published a comprehensive reference on pharmacare. The report explains how pharmacare models are assessed and analyzes the different options, from public coverage of essential medicines to income-based deductible public coverage.

A seat at the policy table: pros and cons

When the report went live, Clement says, “we were invited to speak with the national Advisory Council about our work, which was really the end game. We got a seat at the policy-making table, where decisions would be made about the various pharmacare options.”

But Clement is realistic about the future of pharmacare, in part because of the political nature of the process. “Politics and policy go hand-in hand,” she says. “When Prime Minister Trudeau launched the task force, his idea was that the best solution would be the full-meal-deal, single-payer model. But it might mean higher taxes. Can you really sell a system focused on funding the most vulnerable?”

So the road to pharmacare is paved with “ifs.” Clement suspects that after the next election — if Trudeau is re-elected, and if this is still an issue he wants to tackle — we may see some changes to the pharmacare situation. “But ultimately, it’s hard to say if our report will translate into policy,” says Clement. “We just have to see how it goes.”

Playing the policy game philosophically

Clement has worked with enough policy-makers to know that each process is unpredictable in its own unique way. This is why the sausage factory analogy fits nicely. “There isn’t always a direct connection between what went in and what came out at the policy table,” she says. But she recognizes that significant compromises must be made. “The policy-makers always have to ask, 'What are we really going to be able to do? What will the minister support as an option? What is tolerable right now politically? What is the financial context?'”

There may be no way around this political process in a democratic society, but a health science researcher can always dream. “One thing that would lead to better policies is if we could somehow divorce the political system from policy creation,” says Clement. “But as long as we have the link between politics and policy, there will always be that unspoken question: 'What will get us elected?' And it’s a question which doesn’t necessarily align with good evidence-based policy.”

Health-care policy in the sports arena

Dr. Kathryn Schneider, PT PhD, assistant professor and clinical scientist (physiotherapist) in the Sport Injury Prevention Research Centre in UCalgary’s Faculty of Kinesiology, focuses on policy for sport and health. With a background in physiotherapy and epidemiology (the study of the distribution, causes and control of health problems), Schneider’s expertise is often requested at policy-making meetings.

For Schneider, the policy round-table is likely to include sports organization leaders, and the conversation is most likely about concussions. Her research focuses on the prevention, detection and management of concussions, and she specializes in sport-related concussion in youths and adults.

It’s a topic that is front-of-mind for many Canadians: the treatment and prevention of concussions continues to be a key issue in health care and sport. According to Health Canada, in 2016 and 2017, there were approximately 46,000 concussions diagnosed in children and youth (5–19 years of age) by hospital emergency departments in Canada. Of these concussions, 45–54% were related to sport and recreational activities.

Policy from clinical experience

Schneider’s interest in concussions was sparked by seeing physiotherapy patients who had had concussions and were not recovering well, despite the traditionally recommended extended periods of rest.

“I started noticing that there were problems with different functions related to the neck and the balance system,” says Schneider. So she started treating the problems using physiotherapy techniques, including specific exercises for the neck and balance system. She found that people were nearly four times more likely to be medically cleared to return to sport within eight weeks of starting treatment, compared to those who continued to rest.

“Now there's more research showing that an active approach to treatment is of benefit,” says Schneider. “We now recommend a short rest period of just 24-48 hours, followed by a return-to-sport strategy of gradually increasing physical activity demands.” Her research has gained her prominent roles on advisory committees that help sports organization cope responsibly with concussions.

Effecting change: a numbers game

Like Metcalfe and Clement, Schneider is a strong proponent of the science-based approach. She has seen real-world changes occur thanks to her research in various sports. For example, Schneider worked on a project led by colleague Dr. Carolyn Emery, PhD, which evaluated the risk of concussion in youth ice hockey.

Their work contributed to the decision by Hockey Canada in 2013 to ban body-checking at the pee-wee level (ages 11 and 12). The change in policy ultimately resulted in a 64% reduction in concussion rates for 11- and 12-year-old hockey players in Alberta. This policy change is estimated to reduce the number of concussions in hockey players of that age group by over 4,800 each year in Canada.

 “Our team has been able to do some exciting research that has had a strong impact,” says Schneider. “If we commit to measuring and evaluating what we do, we can better understand how we can affect concussion risk and optimize recovery. But ultimately, our best shot at impacting public health is to focus on preventing concussions.”

Schneider shares her expertise with several organizations that provide guidance on sports injuries like concussions, so her work trickles down to a variety of stakeholders in useful ways. She is part of an expert panel that creates an international consensus on best practices for recognizing and treating concussion in sport. Schneider’s work is featured in the 5th International Consensus Statement on Concussion in Sport, which was published in April 2017 in two special editions of the British Journal of Sports Medicine.

Setting down the latest data on concussions

Schneider is also part of the team that assembles the Canadian guidelines on concussion in sport. It’s the go-to resource for athletes, parents, coaches, officials, teachers, trainers, and health care practitioners. It answers questions like:

  • What are the symptoms of a concussion?
  • What should I do if one of my players gets a concussion?
  • When is it safe for an athlete to go back to school? Back to sport?
  • How long will it take to recover?

 

Recognizing that her research topic is in the public spotlight, Schneider is highly motivated to help health care practitioners and sports organizations understand the complexities of concussions.

“There is big interest in concussion across the country in many different sectors,” says Schneider. “So we need to do our most robust research to find the best way forward. It really is a significant public health concern.”

A need for neutrality

Doing robust research to inform public policy involves being the neutral voice in a room full of strong opinions. For researchers who know their subject area well — be it pharmacare, children’s health or concussions — it might be tempting to advocate for a certain solution to a problem. But there is a clear line between advocating and advising.

“My job is to present and summarize the strengths and weaknesses of the evidence, so that recommendations can be made objectively,” says Schneider, and her colleagues agree.

“Government officials should feel they can come to me for an objective analysis of the options and evidence,” says Clement, “as opposed to my opinion on where I think the world should go.”

Researchers like Clement, Metcalfe and Schneider can’t always predict how their work will inform public policy. In the world of election cycles, polling and campaigning, scientific evidence is not the only factor in the lawmaking process. But their work can help take the guesswork out of policy-making. Solid evidence can help lawmakers solve significant problems — like children’s health, drug plans and concussions — by examining relevant evidence. Scientific data can help lawmakers understand the pros and cons of all available policy options, leading to decisions that benefit the majority of Canadians.

The presence of academics at the policy table nevertheless indicates an interest in basing legislation on unbiased, methodologically rigorous evidence. And that’s why academics have voices on Parliament Hill at a table full of senators. “Making decisions based on data is incredibly important,” says Metcalfe. “If you don’t understand where you are, then how can you understand whether your policy truly makes a difference?”


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ABOUT OUR EXPERTS

Dr. Amy Metcalfe, PhD, is an assistant professor in the departments of Obstetrics and Gynecology, Medicine and Community Health Sciences in UCalgary's Cumming School of Medicine. She is also a member of the Alberta Children’s Hospital Research Institute and the O’Brien Institute for Public Health. Read more about Amy

Dr. Fiona Clement, PhD, is an assistant professor in the Cumming School of Medicine and the director of the Health Technology Assessment Unit in the O'Brien Institute for Public Health. Her research interests include drug and non-drug technology reimbursement and cost containment policy, and evidence in decision-making and health policy development. Read more about Fiona

Dr. Kathryn Schneider, PhD, is an assistant professor and clinician scientist in the Faculty of Kinesiology at the University of Calgary. She is a member of Alberta Children’s Hospital Research Institute and Hotchkiss Brain Institute. Her research focuses on the assessment and treatment of individuals with dizziness, neck pain and headaches following concussion. Read more about Kathryn

 

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