Contributing to CPCSSN is a three-step process:
- CPCSSN technology extracts de-identified patient data from the clinician’s EMR.
- Data are processed to a standard format, cleaned of any possible identifiers, and chronic conditions are identified using CPCSSN algorithms.
- Reliable data are returned to the clinician via the online data presentation tool (DPT).
Data privacy and confidentiality are top priorities for BC-CPCSSN
CPSSN does not extract any directly identifying information from EMRs – no clinics, patients, or clinicians are identified in the database. In addition, all data undergo a process of cleaning that removes any potential identification and transformed to a standard format. The de-identified data are stored on a secure server in a secure university-hosted data centre. Access to these servers is strictly limited and controlled with VPNs and strong passwords. UBC enforces multi-factor authentication for access to all UBC workstations.
The UBC research team members have undergone confidentiality training, and are able to view the de-identified data from your clinic, if deemed necessary for their role. Only the data managers can see the raw extracted data. In addition, these staff can sign any additional confidentiality agreements used by your clinic if desired.
Once the data are extracted (without any personal identifiers), the data are processed at UBC and stored in the BC-CPCSSN repository located in a secure data centre at UBC. This data centre meets all of British Columbia’s provincial requirements under the FIPPA legislation. The cleaned, anonymous data will be combined with national data at a central repository at Queen’s University in Kingston, ON.
The EMR data are stored and processed on servers located in secure, industry-standard data centres located at UBC and Queen’s University. Only de-identified data for the CPCSSN project are stored at Queen’s University. The Queen’s University data centre complies with all Ontario laws required for hosting confidential information, including health data. Access to the secure servers is strictly controlled, and only through encrypted channels, such as Secure Shell (SSH) or Virtual Private Networks (VPNs). Only BC-CPCSSN data managers have access credentials.
The two data tools, Data Presentation Tool and InQuIRE are hosted on a secure web server located in the UBC EduCloud data centre. This data centre is fully compliant with all of British Columbia’s provincial requirements under the FIPPA legislation.
Patient expectations and consent
The public expects that their health data can be used for the purposes of quality improvement and also for provision of quality of care (e.g. diabetics receiving care based on guidelines). Patients also expect that their data are used to generate knowledge for better healthcare services/systems. Patients expect us (clinicians, health systems, universities) to have in place appropriate systems to respect their privacy while being used for public good (e.g. contributing to a learning healthcare system).
Clinics are provided with posters for waiting rooms and exam rooms as well as handouts to distribute to patients that explain the project. We can also provide an email message to be distributed to patients if this is of interest. The average number of visits to the practice for any one patient ranges is about 3-4 per year. Handing out patient information sheets for each patient that comes in should capture most patients within 6 months.
We have used the opt-out model of consent across BC and of the 110,000 patients who are part of BC CPCSSN, there have been 10 opt outs. We use the opt-out model across Canada (with more than 2 million patients) and the numbers in each province are similar. The College of Family Physicians of Canada (CFPC) endorses CPCSSN for their practice improvement initiative (PII). The CFPC helped CPCSSN to create the opt-out model when the project began over 10 years ago, and it has been approved by university ethics boards across the country.