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An innovative web based system for reporting rare diseases in paediatrics
Shamir N Mukhi1, Melanie Laffin Thibodeau2, Barbara Szijarto2
1Canadian Network for Public Health Intelligence, National Microbiology Laboratory.
Insights
The Canadian Paediatric Surveillance Program (CPSP) transitioned to an electronic system (eCPSP), improving rare disease surveillance efficiency. This digital upgrade significantly reduced reporting times and data handling, enhancing child health monitoring.
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.
Background:
Surveillance of rare diseases in children is an important aspect of public health. Rare diseases affect thousands of children worldwide. The Canadian Paediatric Surveillance Program (CPSP) has been in existence since 1996, and provides an innovative means to undertake paediatric surveillance and increase awareness of childhood disorders that are high in disability, morbidity, mortality, and economic costs to society, despite their low frequency. Traditionally, CPSP used manual paper-based reporting on a monthly basis, which although had an impressive response rate, it had inherent longer processing times and costs associated with it.
Objectives:
To provide an overview and evaluate an innovative web-based system that enables seamless reporting from participants across the country providing a quick, reliable and simple mechanism for the participants to submit data while yielding better data quality, timeliness and increased efficiencies.
Methods:
In 2011, a proprietary electronic CPSP (eCPSP) system was developed to provide a simple, quick and reliable reporting environment for participants. It supports both the electronic and hardcopy reporting. The analysis presented in this paper was conducted based on usage data of this system.
Results:
The response rates of the new eCPSP were found to be very favorable with adjusted rate of 80%, which equals the baseline. Approximately 50% of online participants report the first day they receive the notification e-mail. The response time was also reduced considerably. Furthermore, there has been significant reduction in data handling related activities (by almost 70%) from estimated 690 hours per year. Finally, the number of cases reported that do not fit the study case criteria has fallen, likely because participants can now immediately access the case definition and protocol via the online system. This has reduced both staff and investigator time for case processing.
Conclusion:
The eCPSP has modernized the CPSP program from paper-based reporting to efficient online technology while maintaining the core principles of the program. This simple and intuitive approach has proven to be an efficient approach cutting response times significantly while maintaining the desired response rates.
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