6.3.1 PHIPA, Privacy and Research

POGO has achieved designation under the Ontario Personal Health Information Protection ACT (PHIPA, 2004) as a prescribed entity (45.1 status). This designation enables POGO to collect statistical information, utilization data and identifiable data for analysis and evaluation.

Strict rules and guidelines have been put into place to protect the privacy of personal health information in accordance with PHIPA regulations.  POGO’s database (POGONIS) has additional layers of security: record level data is password protected, secured on a server in a locked office, and is only accessible by authorized personnel.

POGO has signed data sharing agreements with tertiary partners as required by PHIPA regulations.  Similar agreements will be negotiated with POGO satellite partners.

Specifically, POGO uses personal health information for the following purposes:

• Analyzing the demographics and epidemiology of cancer in children
• Identifying trends and outcomes, and facilitating and conducting research related to childhood cancer treatment
• Identifying gaps in the delivery of cancer care services
• Developing, implementing and evaluating new treatment programs, and determining the optimal location of such programs

From time to time, pure research proposals involving use of POGONIS data for research purposes not encompassed by the 45.1 status. Such research proposals must be scientifically feasible and relevant, approved by a recognized REB, and approved by senior medical staff at POGO before data is released, under stringent privacy conditions. Record level data is not released to external researchers.