Richard Birtwhistle is a professor in the Queen’s Department of Family Medicine and Public Health Sciences, the director of the university’s Centre for Studies in Primary Care, and the chair and principal investigator of the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). The network collects patient information stored in electronic medical records (EMR) of primary care practitioners across Canada. Using complex algorithms, CPCSSN brings the data from these different EMR systems together into a consistent format. This enables researchers to use those data to answer questions about the incidence and treatment of diabetes, hypertension, depression, chronic obstructive lung disease, osteoarthritis and other chronic diseases that Canadian family physicians commonly deal with.

Launched in 2008, with funding from the Public Health Agency of Canada, CPCSSN now consists of more than 800 primary care practitioners – or “sentinels” – in seven provinces and one territory and the de-identified records of almost one million patients across Canada. Each doctor uses an EMR to record their clinical care of patients by inputting information such as body weight, blood pressure, body mass index, health conditions, referrals, risk factors for disease, lab investigations and any prescribed medications. Before any of this information is uploaded to CPCSSN, each patient is assigned a unique CPCSSN number that links them with their personal information, but this information does not leave the practice. Therefore, any data actually used for research remains anonymous.

The type of information collected in EMRs is difficult to get from other data sources (such as the Canada Health Survey), which is why a centralized repository holds such great potential for researchers and makers of health policy. The data are also useful to the network’s family doctors. Remarkably, although EMRs contain loads of information about individual patients, most systems don’t provide physicians with reports that shed light on all their patients as a group. The CPCSSN database provides this capability, thus allowing the doctors to track their patients better and provide better, more personalized care. This, by itself, is enormously useful.

“We have a system where doctors can find out how many people with out-of-control diabetes haven’t been seen in the last six months, then go back and link the CPCSSN numbers with the patients’ IDs and then contact them and get them into the clinic,” says Birtwhistle. “From a quality improvement point of view, it’s actually pretty important.”

Birtwhistle says EMR data that CPCSSN has collected is a gold mine for researchers seeking to learn more about chronic disease in primary care in Canada. Much of the data remain untapped. But CPCSSN’s greatest value may ultimately stem from enabling the data to be linked with other types of medical data, he says.

Linking patients’ primary care data to genomic data, for example, could open up tremendous potential for understanding not only chronic diseases, but other diseases as well.”