In 1995, POGO’s childhood cancer database (POGONIS) transformed into a fully networked information system. This has allowed us to observe the population, know if certain cancers are increasing in incidence, monitor treatment, follow survival, and understand how these things change over time. In 2004, POGO was designated one of just eight 45.1 entities under Ontario’s Personal Health Information Protection Act, allowing POGO to collect, use and disclose personal health information, including the ability to link its database to other administrative databases, plan for Ontario’s pediatric oncology system and launch invaluable research.
There are multiple study designs, but when we talk about research in medicine, many people think about randomized clinical trials. This type of research can be a very powerful tool when it comes to understanding how X affects Y in a highly selected subset of the population. Drug testing is a perfect example of this. Not every child is eligible for the clinical trial, but the hope is that what we learn from this unique subset we’ll be able to extrapolate to everybody. Of course this is not always the case with clinical trials.
POGO’s database allows us to perform what is called population-based research. This type of study design looks at a population as a whole, in our case all children with cancer in Ontario, and examines what the experience is for everybody. It can help answer questions where outcomes are small and need to be studied on a large scale to understand the answers. Questions like:
For me, population-based research is exciting because it can be just as transformative as biomedical research. The data we have collected in POGONIS, combined with the fact that we can link it to other datasets that are already being collected (Statistics Canada for example), can produce very rich and detailed information that would otherwise be too expensive and/or too labour intensive to collect. It is a very efficient way to utilize all the data that is out there and actually answer questions that can translate more immediately into improved care and better outcomes for the individuals we serve: patients, families and survivors of childhood cancer.
– Dr. Jason Pole
Dr. Jason Pole is Senior Scientist with the Pediatric Oncology Group of Ontario and is an Associate Professor in the Dalla Lana School of Public Health, University of Toronto and an Adjunct Scientist with The Hospital for Sick Children Research Institute and the Institute for Clinical Evaluative Sciences, Toronto. Dr. Pole has a background in epidemiology and health services research with an emphasis in the use of administrative data and complex survey instruments.