POGONIS

In 1983, POGO determined that none of the sources of data on childhood cancer available at that time provided sufficient or adequate information required for proper policy development and planning. Responding to this gap, POGO has built and maintains POGONIS – the Pediatric Oncology Group of Ontario Networked Information System – a database and registry capturing selective, standardized data on all childhood cancer cases in Ontario . Each of the five POGO centers across Ontario feeds data on the children it cares for, and is able to use POGONIS to track its own statistics regarding patients and service output.

The purpose of POGONIS is to monitor:

• The incidence and prevalence of childhood cancer
• The demand for care
• The nature and specifics of treatment
• Patient outcomes
• Long-term effects of childhood cancer and its treatment

Coupled with the knowledge capital represented within POGO’s Board, staff, and standing committees, POGONIS is the cornerstone of expert advice and planning for the province. It is a unique source of reliable, validated data that is the basis for:

• Precise estimates of the incidence of childhood cancer in Ontario
• Planning new programs and ensuring decisions about where to locate these are well informed
• Provision of data for multiple research projects
• Population-based research on the POGONIS data itself
• Accurate projections of the number of children to be treated in the future
• Forecasting of staff requirements
• A clear understanding of where the children live in relation to where they are treated, in order to facilitate the strategic location of treatment facilities

Recently, POGONIS was restructured to enable local data query by POGO partner hospitals. In 2003, POGONIS was further expanded to include the tracking of late effects faced by survivors, and services provided in the POGO AfterCare clinics.