Written by Debby Waldman, illustration by Carl Weins - Originally appeared in Apple Magazine, Winter 2018

Unless you're a researcher or a geek, you probably spend little time thinking about data. Alberta Innovates and Alberta Health Services want to change that.

In September, they posted data online that gives insight into the type of health care services used, the diseases they are diagnosed with and the cost of their care.

The information was released as part of the Secondary Use Data Project (SUDP).

"Data makes you think," says Michelle Mondeville of Alberta Innovates. "It makes you ask questions, and makes you more informed, and we want Albertans to be more informed about their health and their communities."

In today's information age, data is a valuable resource that's used and collected everyday in everything from banking and shopping to fitness apps and Facebook ads.

Alberta's healthcare system collects massive amounts of it daily: every time you visit a clinic or hospital, care providers take details such as your name, age, address, blood pressure, height, weight and more.

Such information is called primary data and is strictly protected under provincial law: only your immediate healthcare professionals are allowed to see it.

Secondary use data is information that's been collected for one use and repurposed for another, usually to identify trends and patterns. It's also combined with other sets of data and any information that could identify a person is removed.

The secondary data on AHS's website is used in many ways. Researchers use it to learn more about diseases and to develop state-of-the-art medical devices, technologies and treatments. Health planners use it to learn about a community's or specific group's health needs and, in turn, provide greater care and build healthcare facilities such as hospitals, clinics and supportive living sites.

Organizations such as the Canadian Cancer Society and Heart and Stroke Foundation can use the data from AHS' website to get a better idea of where to distribute pamphlets.

Policymakers mine secondary use data to shape and improve public programs and services.

AHS also uses its own secondary data. For example, it mines the information to better understand how it can help improve care for Albertans with chronic lung disease and to better provide the right mix of facilities, programs and skilled healthcare providers across the province. AHS's Maternal, Newborn, Child and Youth Strategic Clinical Network is using secondary use data to improve the care of children with complex health needs.

Data can pique curiosity

The Secondary Use Data Project has three phases and began in 2015. During phase one, more than 70 people from 18 public, government and private organizations recommended how such data could be shared, accessed and used.

"Accelerating innovation is what Alberta Innovates is about and this project highlights our role as innovation brokers," says Tim Murphy, Alberta Innovates VP of Provincial Platforms and SPOR, and the SUDP co-chair.

By partnering with AHS so they can make health data more easily available means we contribute to advancing research into care, bringing innovation to market faster and inspiring new ideas and technologies."

Phase two of the project includes posting data on AHS's website. One of the goals is to give more Albertans a chance to use data that's typically been available only to researchers.

"We know that researchers want health, but what about teachers, students and others?" Mondeville says.

"We've presented this data in a way that will attract people and pique their curiosity. We want Albertans to become familiar with such data and learn how to make use of it. That is data literacy at its most open."

Working on the project has given Mondeville the opportunity to speak to many Albertans. When they discover they can learn more about the health of people their age and in their area, they're fascinated. Often, she says, their first priority is to find out about people their own age.

"When people begin looking at data, they want to know more," she says. "If you realize that the prevalence of mental health or heart disease in your age group is high, you'll want to learn more about it. The data we're releasing through this project gives people a place to start."

Gold waiting to be mined

If the Secondary Use Data Project website is successful-if it improves Albertans' data literacy, and they and other users find it valuable-more data could be released.

When data is readily available it's like striking gold. It's readily available to everyone and in this case, the project analysts have sorted and categorized the information, making it easier for all users to find what they're looking for.

"There is a lot of data out there in our health system and we aren't even using half of it for secondary purposes such as health and innovation," Mondeville says. "Innovation is what we are all about. We want to accelerate improvements into healthcare and the performance of the healthcare system. We know we have a wealth of data, and we want to clear a path for better access to it."

Stafford Dean is the chief analytics officer at Alberta Health Services. He says analyzing information is vital to tracking new programs and services.

"We need data as part of the continuous outcome improvement journey," Dean says. "We use it as feedback to inform us if our system redesigns are achieving the results we expect."

The Internet as we know it was nonexistent when Alberta Innovates researcher Jeff Johnson began studying diabetes management in Alberta 25 years ago. Back then, he says, he could not have imagined something like the Secondary Use Data Project.

About 10 years ago, he began thinking about ways he and other researchers could move data from their studies into the healthcare system. They wanted to make the information more available and more useful.

"The health system needs to be a learning environment," Johnson says. "It needs to be conducting research, to evaluate the programs and systems we pay for with our taxes."

A professor and associate dean of education in the School of Public Health at the University of Alberta, Johnson is also the director of the Alliance for Canadian Health Outcomes Research in Diabetes. He's worked with Alberta's healthcare system throughout his career.

Between 2006 and 2011, as part of the Alberta Diabetes Surveillance System, he identified diabetes-related trends in the province and reported them to Alberta Health.

Between 2012 and 2016, he surveyed patients with Type 2 diabetes as part of Alberta's Caring for Diabetes (ABCD) project. He gathered information that wasn't in the province's health databases, such as how patients looked after themselves and how self-care affected their health.

Johnson estimates nearly 300,000 Albertans are living with diabetes, roughly seven per cent of the population. Only 2,000 of those people were part of ABCD.

While other Alberta researchers study diabetes in First Nations communities, they all lacked the ability to house their research with Johnson's and with AHS data.

Johnson's new project will fill that gap. The Diabetes Infrastructure for Surveillance, Evaluation, and Research will bring their research under one umbrella. That will make it easier to understand the effect of diabetes on Albertans.

"If we want to improve the quality of care and improve the health status of people living with diabetes, we need to understand what the health system is doing and what the people themselves are doing," Johnson says.

Bigger data is better evidence

When it comes to data, bigger is better. Studies with large numbers of people generate more reliable information: numbers create statistics and larger numbers translate to stronger and more conclusive statistics. That makes for better evidence.

The province's largest health research study is Alberta's Tomorrow Project (ATP). It is part of nationwide research involving more than 300,000 Canadians.

When it began in 2000, the ATP was looking for evidence that linked cancer to environmental, lifestyle and genetic factors. The focus has widened to include chronic conditions such as diabetes, obesity and heart disease. That's because those diseases and cancer share some of the same risk factors, among them a lack of physical activity, poor nutrition and obesity.

The study was open to anyone between ages 35 and 69 who had not been diagnosed with malignant cancer. By 2015, 55,000 Albertans had joined the study; all filled out a lengthy survey to provide baseline information. Many also gave blood samples and had a physical exam.

Paul Gustafson, 42, a pharmacist who lives in Olds with his wife and two children, signed up five years ago. It took him hours to fill out the survey and drive to and from Calgary for his exam.

The time was well worth it, he says, if it will spare others the havoc he has seen cancer wreak on his family and his pharmacy customers.

When Gustafson was 10 years old, his maternal grandmother died from bowel cancer. "It was a long, painful journey that really took a toll on my mother, who was one of her caregivers," he recalls. A few years later, his paternal grandfather was diagnosed with liver cancer. He was dead within a week.

Then there are Gustafson's customers. Many are family members of cancer patients picking up prescriptions for loved ones.

Because the study will follow participants for 50 years, Gustafson says he doesn't expect quick results.

"This is a demographicbased study that is going to take decades and decades for them to learn and improve treatments," he says. "I hope, maybe, that if I am diagnosed with cancer, they will have learned something that helps me, but this is really trying to benefit my children and that generation, more than my personal health."

Study researchers and evaluators are combing over the findings. They've released information such as how closely following cancer prevention guidelines can lower the risk of the disease and how some lifestyle factors affect health.

Dozens of investigators studying health trends within Alberta and beyond have made use of the ATP data. Others are applying it to learn more about the causes and prevention of cancer and chronic diseases. Those connected to accredited institutions are given access to the data, as long as their proposal furthers knowledge in these areas.

"This is an incredible resource for Albertans and people beyond Alberta," says Amanda Davison, ATP's strategic director. Because the Alberta project is partnered with studies in British Columbia, Ontario, Quebec and Atlantic Canada, "we constitute one of the largest research platforms in the world and the largest in Canada."

Data reveals stories

ATP is generating deep pools of data and recently began its fourth followup survey. "We are about to get an influx of many hundreds of thousands more points of data, so making sense of it all is the big challenge," Davison says.

Making sense of the data is just the beginning.

"Data starts the story, and the story will evolve," Mondeville says. "It helps to inform the researchers, and it gets people thinking and wanting to know more. More knowledge is better because it translates into better health and wellness and better healthcare. That's what we want for all Albertans."

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