Development of a national data set
for paediatric rehabilitation
Alexandre Bilodeau is now a household name for everyone in Canada, as the first Canadian Olympian to win a Gold Medal on Canadian soil. On February 14, 2010, when Alexandre Bilodeau won an Olympic gold medal for men’s moguls, his first thoughts were of his brother Frederic who continues to inspire both on and off the ski hills. Frederic has cerebral palsy and has defied what doctors told his family about his prognosis and has made exceptional progress. However, it is difficult to know whether the rehabilitation services he received were exceptional, whether Frederic himself was exceptional, or both. When the Bilodeau family discovered the lack of information available about the quality of rehabilitation services for children, they were shocked. Without this type of information it is not possible to determine if there is a need for service improvements, to know whether resources are being used effectively and what are the best ways of serving clients based on evidence of best practices.
Since the 2010 Olympics, Alex and his family have been working in partnership with the Canadian Association of Paediatric Health Centres (CAPHC) to support the development of a national child and youth rehabilitation data set that will allow the capture and analysis of data to address these gaps. “CAPHC is proud and honored to be working with the Bilodeau family on this very important national program”, says Elaine Orrbine, President and CEO, CAPHC.
A number of Canadian organizations have also expressed concern about this data gap. In a 2007 Health Canada report by Dr. Kellie Leitch, Reaching for the Top: A Report by the Advisor on Healthy Children and Youth, it is stated:
“Better coordination is required among the national data collection agencies and large research projects associated with child and youth health. A key recommendation in this area is standardizing data sets. Mechanisms of coordination and improved access must be created between Statistics Canada, the Canadian Institute for Health Information and the Public Health Agency of Canada in order to create appropriate comparable data sets that are easily accessible to clinicians, researchers, and organizations that are involved with child and youth programs and policy development”
Paediatric rehabilitation services provide the necessary support to ensure that clients with developmental, behavioural or motor disabilities are able to participate in society to the maximum of their potential. These services are important to ensure a high quality of life for children and youth with disabilities and their families.
Service providers have difficulties knowing how well they are serving their clients to support a high quality of life. The absence of standardized outcome measures and common language severely limits our understanding of the quality and impact of services and accountability at a system level because it is not possible to make accurate comparisons of outcomes and resource utilization. Additional information is required to understand which programs and approaches generate the greatest gains in functional abilities and to identify the optimal mix of resources and/or services. Rehabilitation resources are finite and must be used wisely to ensure timely and appropriate access to needed services and interventions.
To address this paediatric rehabilitation information gap, CAPHC through its CN-CYR network is developing a national data set (NDS) to monitor, evaluate and improve services. This data set will be used to facilitate provincial comparisons and identify best practices and benchmarks across Canada to support high quality rehabilitation service provision.
The process to create the data set began with a national survey to gain a better understanding of populations served, services provided, performance indicators and data elements currently in use. Members of CN-CYR then identified priorities for data collection including service effectiveness and efficiency, access to services, client and family focused care and safety.
This national program is currently determining the feasibility of collecting data at several pilot sites. The initial focus will be on outpatient services for clients with cerebral palsy or autism spectrum disorders. An operational review is being done at the participating pilot sites to understand the resource and privacy impacts, as well as operational needs for implementation.
An evaluation of the pilot project will be conducted and used to inform recommendations for national implementation. A national framework for reporting will be created that will support ongoing monitoring, evaluation and reporting on indicators including facility comparisons, national comparisons, benchmarking and trending over time.
How can you help?
• Support improved quality, efficiency and accessibility of health care services across the continuum of care
• Champion the implementation of a pan-Canadian paediatric rehabilitation data set
• Get involved, become a member of CAPHC and CN-CYR by contacting info@CAPHC.org
The Canadian Association of Paediatric Health Centres (CAPHC) is dedicated to improving and promoting health service delivery for children and youth across the continuum of care. In 2004,CAPHC established the Canadian Network for Child and Youth Rehabilitation (CN-CYR) to support national collaboration in the paediatric rehabilitation community. CN-CYR identified a need to better understand how to strengthen the delivery of paediatric rehabilitation services and initiated the creation of a national data set for paediatric rehabilitation.
For more information on CAPHC and CN-CYR visit: