Canada has established their first multi-disease electronic record surveillance system that provides de-identification of personal health information when submitted to a central repository. Called the Privacy Analytics Risk Assessment Tool (PARAT), the tool de-identifies personal health information for each network and then the data is sent to a central repository.
The PARAT has been proven to enable data to go where it has never gone before. For example, PARET sends data to the “Canadian Primary Care Sentinel Surveillance Network (CPCSSN) which is a digital health information repository headquartered in Kingston Ontario.
CPCSSN is funded by the Public Health Agency of Canada via an agreement with the College of Family Physicians. The CPCSSN provides information to governments, physicians, nurses, and researchers in Canada that are able to monitor chronic diseases such as diabetes, hypertension, and depression.
According to Dr. Karim Keshavjee, as Data Architect and EMR Consultant to CPCSSN, “PARAT has democratized research data. If the information is de-identified to an acceptable level, than we can make it available to researchers who have ordinary security but may not have extra ordinary security.”
In another case, Dr. Craig Earle had the foresight to want to link Ontario’s cancer data resources and to provide de-identified data directly to health services researchers. He then established the Ontario Cancer Data Linkage (cd-link) program which is housed in the Institute for Clinical Evaluative Sciences. PARET software was selected to assess the risks of re-identification and to de-identify the data.
Prior to the adoption of PARAT, access to research data was complicated and costly. Researchers seeking cancer data would sometimes have to travel to Toronto and plan on spending some time inside secure offices.
Now all that has changed for cd-link researchers when they are ready to submit a research proposal and define a plan since a copy of the disk is received with all of the de-identified research data included. The cd-link program is able to provide access to nine datasets with more to come.
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