POGO AfterCare Program Database
Description
POGO’s Provincial Pediatric OncologyAfterCare Program provides routine health screening and education to survivors of childhood cancer at risk for long-term health-related effects from their cancer treatment. POGO AfterCare Clinics collect and retain patient information in the POGO AfterCare Program Database, which is maintained under the legislative authority of POGO’s Prescribed Entity designation through the Personal Health Information Protection Act, 2004 (PHIPA).
Statement of Purpose
What is the purpose of the data holding?
The purpose of this data holding is to securely store visit and treatment information for survivors of childhood cancer followed in POGO AfterCare Clinics, inform program planning and evaluation and conduct analysis and reporting for the Ministry of Health. Data captured in the data holding is both linked and compared with POGO’s childhood cancer database, POGONIS, to ensure accuracy, facilitate additional analysis and support potential research endeavours.
What PHI is contained in the data holding?
The patient personal health information (PHI) contained in the data holding includes:
- First name, middle name and surname
- Date of birth
- Hospital-assigned medical record number (MRN)
- Health screening tests and results (e.g., results of echocardiograms, breast cancer screening, etc.)
What is the source of the PHI?
Local hospital-specific medical records at the POGO AfterCare Clinics are the source of PHI for the data holding.
Why is PHI needed in relation to the identified purpose?
PHI is required for the purposes of administering the program and enabling program planning, evaluation and improvement. All records are linked to POGONIS by the POGONIS Registration ID for analysis, research and reporting.
The specialized childhood cancer programs search within the data holding by inputting one or more PHI data elements to identify whether the patient has been registered in POGONIS. Once a patient has been registered in POGONIS, the survivor can be registered in one or more POGO AfterCare Clinics. Once registered, the POGO AfterCare Clinic(s) can access the patient’s record and input patient PHI data related to patient encounters.
The POGO AfterCare Clinics may input a patient’s hospital-specific MRN to facilitate retrieval of data and ensure consistency of the data holding with the local medical record.
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:
- It cannot verify the accuracy of the POGONIS Registration ID which is necessary to facilitate analysis and research using linkages and
- The POGO AfterCare Program Database is a patient-level, point-of-care database.
Contact Us
For any questions or concerns about the POGO AfterCare Program Database, please contact clinicalprograms@pogo.ca.
We welcome requests for the use of the data in the POGO AfterCare Program Database and other POGO PHI data holdings for analysis and/or research purposes.
POGO values privacy and protects the personal health information (PHI) of children and youth with cancer, survivors of childhood cancers and their families.
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