Description
The POGO Networked Information System (POGONIS) is an active, population-based database of all children and adolescents with cancer diagnosed and/or treated in a specialized childhood cancer program in Ontario. POGO collects and retains information in POGONIS under the legislative authority of our Prescribed Entity designation through the Personal Health Information Protection Act, 2004 (PHIPA).
Statement of Purpose
What is the purpose of the data holding?
In Ontario, POGONIS is a source of reliable, validated data used to monitor:
- The incidence and prevalence of childhood and adolescent cancer
- The need for cancer care for children and youth
- The nature and specifics of childhood cancer treatment
- Patient outcomes
- Long-term effects of childhood cancer and its treatment and
- Health service utilization, system quality indicators and program evaluation.
POGONIS also produces diagnosis and treatment summaries for survivors and enables the assembly of cohorts for investigation in multiple pediatric cancer analysis and research projects.
What PHI is contained in the data holding?
The patient personal health information (PHI) contained in the data holding includes:
- Name
- Date of birth
- Sex
- Postal code
- Health card number
- Hospital chart numbers
What is the source of the PHI?
The source of the PHI is the cancer patient’s hospital chart at the specialized childhood cancer program.
Why is PHI needed in relation to the identified purpose?
PHI is needed because POGONIS is the source of population (Ontario) data that is validated with source data (the patient chart). The PHI is required to produce diagnosis and treatment summaries for survivors and to enable linkage of the data with other administrative datasets necessary to facilitate analysis and research.
Why won’t de-identified and/or aggregate information serve the identified purpose?
De-identified and/or aggregate information will not serve the identified purposes because POGONIS is a patient-level, point-of-care database.
Contact Us
For any questions or concerns about POGONIS, please contact pogodatateam@pogo.ca.
Data Requests
We welcome requests for the use of the data in POGONIS and other POGO PHI data holdings for analysis and/or research purposes.
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Data Privacy
POGO values privacy and protects the personal health information (PHI) of children and youth with cancer, survivors of childhood cancers and their families.