An innovative web based system for reporting rare diseases in paediatrics

Area of Science:

• Pediatric Public Health
• Epidemiology
• Health Informatics

Background:

• Rare pediatric diseases pose significant public health challenges, impacting child morbidity, mortality, and healthcare costs.
• The Canadian Paediatric Surveillance Program (CPSP) traditionally used manual, paper-based reporting, which incurred delays and higher operational expenses.
• Despite its effectiveness, the traditional CPSP faced limitations in processing speed and cost-efficiency.

Purpose of the Study:

• To evaluate an innovative web-based electronic system (eCPSP) designed for seamless national reporting of rare pediatric diseases.
• To assess the impact of the eCPSP on data quality, reporting timeliness, and overall system efficiency.
• To provide an overview of the eCPSP's functionalities and benefits for surveillance participants.

Main Methods:

• Development and implementation of a proprietary electronic Canadian Paediatric Surveillance Program (eCPSP) system in 2011.
• Analysis of system usage data to evaluate performance metrics, including response rates and processing times.
• The eCPSP system was designed to support both electronic and traditional hardcopy reporting.

Main Results:

• The eCPSP achieved a favorable adjusted response rate of 80%, matching the program's baseline.
• Approximately 50% of participants submitted reports on the same day they received notification emails.
• Significant reductions were observed in data handling activities (nearly 70%) and case processing time due to immediate access to case definitions.
• A decrease in the number of non-compliant reported cases was noted, improving data accuracy.

Conclusions:

• The eCPSP successfully modernized the Canadian Paediatric Surveillance Program by transitioning from paper-based to efficient online reporting.
• The new system maintains the core principles of the CPSP while significantly improving efficiency and reducing response times.
• The intuitive and simple design of the eCPSP has proven effective in enhancing pediatric disease surveillance.