Building a brighter future: a look at the development, evolution and power of paediatric data

Submitted by the Canadian Institute for Health Information (CIHI)


It’s hard to imagine a time—in the early days of Statistics Canada, before the creation of CAPHC or CIHI—when collecting data meant meticulously piecing together information using punch cards and rudimentary tabulation equipment. We’ve come a long way since then. Now with a flick of the wrist, a hand-held device or online tool displays a wealth of real-time information in a matter of seconds. While the type of data and the way we collect and use it have both changed dramatically over the years, what hasn’t changed is the power of data to transform outcomes, track trends and influence the policies that govern our health care systems.  

Nowhere is the power of data more important than in paediatric health care. While information on health and health care for children has been around for decades, it hasn’t always been easily accessible, nor was it consolidated in one place. More importantly it wasn’t readily comparable across jurisdictions. It was this vision to build a pan-Canadian health information system with a strong national approach to data that led to the creation of CIHI almost 25 years ago.

Where at one time the data we collected might have focused primarily on disease and hospital-based care, today the data we collect is diverse and therefore more readily able to provide a broader picture of health and wellness. CIHI now has a robust set of 28 databases to capture health care experience across the care continuum.

In addition to expanding the type of data we collect, how we access and use this data has also changed over the years. By forging positive relationships and working with key stakeholders to enhance the value of data, we’ve created space to encourage the analysis and translation of data findings to foster health care transformation.

Consider a disease like asthma. In addition to knowing how many children and youth are hospitalized for asthma, today we can also tell how socioeconomic inequalities like education and income impact those hospitalization rates. Or consider the issue of Intentional self-harm among youth in Canada. We can tell not only the number of youth—male or female—admitted to hospital for suicide or self-harm, we can also analyze the contributing factors behind those statistics. And we can track and learn from trends in the use of hospital services and medications among children and youth with mental disorders.

It is this type of access to comprehensive and varied sources of data that policy makers and system managers depend on to make the best possible decisions for children’s health and development.

We see the results of this again and again through the creation of new guidelines and policies. CIHI’s data on neonatal abstinence syndrome (NAS) shows how the worsening opioid crisis is affecting even the youngest Canadians who are born with symptoms of drug addiction and withdrawal. In response to the growing NAS numbers, the Canadian Paediatric Society released updated guidelines outlining recommendations on how to treat babies born with this condition.

The importance of collaborating with health care and health information stakeholders is essential to helping us unlock the power of data. CIHI is governed by and works in partnership with the federal government, provinces and territories and health systems across the country in the collection of health data. Other important collaborators include Statistics Canada, and non-profit and professional organizations like CAPHC.

Working with our partners, we have a responsibility to make our data available, understandable and usable for those running and using the health care system and those responsible for health policy. We do this through reports, analyses, our website, CIHI Portal and other tools.

The ability to bring decision support to the desks of health care workers through online dashboards and visualization tools is just one example of progress made through the historical partnership between CAPHC’s Canadian Decision Support Network (CPDSN) and CIHI. It marked an important chapter that brought targeted evidence and data to CPDSN members over many years, through an unprecedented child-and-youth-population focused Community of Practice and unique Portal dashboards on emergency visits, asthma and mental health.

Recently, CIHI, CAPHC, and other stakeholders have also worked together to create the national Paediatric Rehabilitation Reporting System (PRRS) accessible through CIHI’s web-based data capture tool. PRRS is the first Canadian reporting system to collect data about, and report on, infants, children and youth who access rehabilitation services from across the country.  

CIHI is also supporting the Ministry of Child and Youth Services in Ontario’s implementation of the interRAI Child and Youth Mental Health (CHYMH) instrument. The tool is setting a new standard for timely, quality-driven data, supporting decision making at all levels—from policy and system planning to program planning for youth agencies and care planning for individuals.

Other advancements in paediatric information can be seen across the country. Examples exist both locally and nationally, from Statistics Canada’s new Canadian Health Survey on Children and Youth, to the inventory of child health data sets available to researchers through Ontario’s Child Health SUPPORT Unit.

Keeping personal health information secure and private is vital to the work we do. With the advent of new data processing software, online tools, and cloud computing, CIHI strives to keep policies, protocols and procedures that maintain the privacy and security of data up-to-date. It’s a task we revisit often as new information technology systems evolve.

These same advances in technology bring with them stressors faced by children and youth today we couldn’t possibly have imagined a few decades ago—cyber bullying, social media and addiction to online gaming, as well as questions over parental rights and consent. Many of these pressures manifest themselves physically and mentally through symptoms that include obesity, early onset diabetes, eating disorders, self-harm and suicide.  

If we are to collectively address these and other emerging issues going forward, it will be essential to continue to connect the dots on data to include the fullest spectrum of health and wellness. It will also be important to continue to measure and report on this data through indicators that track pan-Canadian progress on issues vital to children and youth, such as access to services for mental health and addictions.

We’ve come a long way in our vision for a national approach to data but we’re not quite there. While pockets of rich data sources on children and youth are available across the country, there is still more work to do to create a truly national repository that puts all information—both health and non-health—together.  

These are just a few of the reasons why CIHI has identified children and youth as a priority population in our strategic plan (2016-2021). We are grateful for the input from CAPHC and other stakeholders who provided advice on the framework driving our approach to this population. This valuable input ensures that our work—together with that of our partners—will continue to provide the critical information necessary to help shape important aspects of health and wellness in paediatric care going forward.

We’re excited to be part of the journey.


 About CIHI: CIHI was established in 1994 to build a pan-Canadian health information system and provide unbiased information on the state of the nation’s health and health care. We had a vision of a strong national approach to data.