The Canadian Primary Care Sentinel Surveillance Network (CPCSSN) extracts de-identified patient data from the electronic medical records of primary care practices across the country. CPCSSN applies cleaning, coding and standardization algorithms to transform raw EMR data into meaningful information that can be used for quality improvement, chronic disease surveillance, and research.
Participating clinicians can access their own data through bi-annual feedback reports, allowing for comparison of patients at various levels (e.g. other patients seen at their clinic, within the health division, and across the province). The Data Presentation Tool (DPT) is another way for physicians and clinics to undertake quality improvement initiatives.
Clinicians can learn details about their practice patterns (e.g. how often are SSRIs prescribed for depression management in younger patients). CPCSSN has developed algorithms to help identify over 13 conditions (e.g. depression, diabetes, osteoarthritis, Parkinson’s), which can assist in panel management and optimization. Re-identification of patients is possible only within the clinic environment; talk to your regional CPCSSN network for more instructions.
To become a member of CPCSSN, contact the regional network closest to you.
Once your practice has enrolled, data are automatically extracted from your practice’s EMR without any ongoing effort on your part. Periodically, CPCSSN may seek to make changes to the range of data collected or uses of collected data. In this situation, we will inform sites of potential changes and may seek your renewed consent to participate. At any time, practices can choose to end their participation in the study. Individual patients at participating sites can also opt out of CPCSSN and no data will be collected on these individuals.
Each type of EMR system differs slightly in the extraction process. Data extractions occur twice each year (or quarterly in some regions) on June 30 and December 31. The data cleaning, coding, and standardization processes usually take 1-2 months after the data are extracted. Your DPT will be automatically updated after these processes are complete.
Each regional CPCSSN network performs the data extraction for sentinels in their local network, with the data stored on a secure local server at Queen’s University and/or on a secure server within the appropriate academic institution (e.g. university). Once the data are cleaned and processed locally, regional data from each network is merged into the national repository stored at the Centre for Advanced Computing at Queen’s University. This is a highly secure, remote-access facility with multiple administrative, technical and physical safeguards https://cac.queensu.ca/overview/.
CPCSSN does NOT extract all patient data. CPCSSN extracts mainly structured data (e.g. lab values, blood pressure) and not notes or PDFs contained within EMR. CPCSSN does NOT extract identifiable information—we take great pains to extract only de-identified data.
Data are extracted from specific fields (e.g. billing, health condition, reason for visit, lab, medications) and all patients are provided with a random CPCSSN ID.
The most reliable and accurate method is to re-do the full data extraction at every refresh. This means all previously extracted data will be re-extracted along with any new data since the previous extraction. All data will be re-processed and the clinician’s DPT will be updated accordingly.
Once your practice has enrolled, data will be automatically extracted from your practice’s EMR – approximately every 3-6 months – and the DPT will be updated accordingly. If there are any changes to the type of data collected or uses of data, all practices will be informed of the changes and we would ask for your renewed consent to participate. At any time, practices can choose to end their participation in the study. Individual patients at participating sites can also opt out of CPCSSN and no data will be collected on these individuals.
Consent and Privacy
CPCSSN does not extract any directly identifiable patient information, such as healthcare number, name, address, phone number, etc. All patients, providers, and clinics are assigned a random study ID; no names of clinics or providers are included in the CPCSSN database. There is additional de-identification software that is run to fully anonymize the data before the CPCSSN data are provided for research use.
Patients expect that their data are used to generate knowledge for better healthcare services/systems. All patients have the option to opt out of having their data included in the CPCSSN database. Although, we have very low numbers of opt outs across Canada. Patients who do wish to opt out can notify their primary care practitioner or a clinical staff member, who then must notify their regional CPCSSN network.
The College of Family Physicians endorses CPCSSN for their practice improvement initiative (PII). They helped CPCSSN to create the opt-out model when the project began over 10 years ago.
Linking data allows for more exhaustive data sets and can enable research involving multiple variables that cannot be researched with one data source alone. CPCSSN has linked CPCSSN-collected electronic medical record data with complementary administrative health data so that complex conditions involving many variables can be researched. For example, a CIHR-funded study is examining frailty among elderly adults, which requires information on several physiological functions (e.g. blood pressure) in addition to information on the use of health care services (e.g. hospitalizations). Data linkages must be conducted within each regional network and may not feasible in all networks.
Yes – researchers approved by CPCSSN can request fully anonymized data sets from CPCSSN with which to conduct research. These are in addition to the Data Presentation Tool (DPT), CPCSSN’s quality improvement tool.