Description
The POGO Financial Assistance Program, funded entirely by private-sector donations, supports families through the enormously financially challenging period of a child’s active cancer treatment. The POGO Financial Assistance Program Database is a consent-based data holding wherein patients and families provide consent for their information to be collected and used in the data holding.
Statement of Purpose
What is the purpose of the data holding?
The purpose of this data holding is to securely store, manage and process family registration, direct deposit and claim information to administer the program and enable program planning, evaluation and improvement. 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 and family personal health information (PHI) contained in the data holding includes:
- Patient first and last name
- Patient date of birth
- Patient address, city and postal code
- Patient date of diagnosis
- Patient date of relapse if applicable
- Main hospital where family is receiving treatment
- Primary family contact first and last name
- Primary family contact email address
- Alternate caregiver first and last name
- Primary family contact or alternate caregiver banking information (bank name, transit number and bank account number)
What is the source of the PHI?
Patients and families provide consent for their PHI to be collected and entered into the POGO Financial Assistance Program Database by Social Workers, POGO Interlink Nurses and Resource Navigators in the specialized childhood cancer programs at our tertiary centre hospital partners.
Why is PHI needed in relation to the identified purpose?
PHI is required to match patient information for the purposes of administering the program, enabling program planning, evaluation and improvement and verifying the accuracy of the POGONIS Registration ID for analysis and research through linkages.
- Patient first and last name and date of birth: Enables connection to POGONIS
- Patient address, city and postal code: To issue cheques to the family when direct deposit is not available (i.e., religious and/or cultural beliefs)
- Patient date of diagnosis/date of relapse: Ensures financial assistance is issued to families on active treatment in accordance with program eligibility criteria
- Primary family contact first and last name: To address correspondence and ensure cheque is issued to the correct person
- Alternate caregiver first and last name: For compassionate and paid hotel access
- Banking information: Ensures claims/funds are issued to the correct account
Where POGO uses email for program administration and service delivery purposes, only the primary family contact or alternate caregiver is identified. The primary family contact and alternate caregiver first and last names are used when booking a hotel for the compassionate hotel program. The primary family contact and alternate caregiver need to give consent for their name to be shared with the hotel. The patient’s name is not provided to the hotel.
When healthcare providers are submitting claims, they may not know the Family ID and request confirmation through POGO. In such scenarios, many of the PHI variables are used to ensure the correct family is identified and the correct Family ID is provided for accurate processing of claims.
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 negates the ability to provide financial assistance as the family’s identity would not be known and claimed funds could not be issued
- It cannot verify the accuracy of the POGONIS Registration ID which is necessary to facilitate analysis and research using linkages and
- The POGO Financial Assistance Program Database is a client-level database for a service delivery program.
Contact Us
For any questions or concerns about the POGO Financial Assistance Program Database, please contact financialassistance@pogo.ca.
Data Requests
We welcome requests for the use of the data in the POGO Financial Assistance Program Database 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.