The Canadian Primary Care Sentinel Surveillance Network (CPCSSN) has successfully implemented the first pan-Canadian primary care electronic medical record health data repository available for academic research. In the Research Hub, you will find information about CPCSSN’s data access process, resources to help you understand our data holding which include a Sample Data Package, Data Dictionary, Table by Table FAQ, Tutorials, Publications, and Case Definitions. The Research Hub also provides information to support your use of the CPCSSN Secure Research Environment.

  • Access Data and Services
  • Understanding CPCSSN Data and Resources
  • Support and information requests

Researchers can submit a request to access our national primary care data set. All requests are subject to committee review and data is accessed within our secure research environment.

  • Project Service Fees

    A cost recovery fee will be charged. Charges are based on a cost recovery for the following activities:

    • Application support including answering questions regarding the approval process, application process, study population definition and suitability
    • Application review and coordination
    • Preparation of the approved data files
    • The complexity of preparing a customized data cut
    • Provision of the appropriate documentation (e.g. information sharing agreement, ethics certificate, etc.) to support the use of the data
    • Support for use of the data, including answering questions about data fields and coding specifics
    • A contribution to the ongoing operation and development of CPCSSN
    Project service charges often fall between $5,000 to $20,000 per project. CPCSSN reserves the right to change its cost recovery structure at any time. Table 1 below outlines the standard cost recovery model with services broken down into data, administrative and SRE (secure research environment) services.
  • Secure Research Environment Costs

    Secure Research Environment charges start at $2,500 per annum for up to three users and vary slightly depending on the resources required by the project. The minimum billing increment is three months. Typically, the first year is charged at the outset of the project, with additional Secure Research Environment fees (Table 2) being charged as needed.

    CPCSSN Fee Schedule

    Secure Research Environment (SRE) Access FeeFee Amount
    SRE initial access$2,500 (3 users/1 year)
    Additional user   $500 per person
    Switch users$500 per switch
    Backup files recovery$500 per request
    Project Data Fee 
    Academic$5,000
    Non-Academic$20,000
    Data set revisions$500 minimum; $150 per hour of work required to complete
    Administrative Fee 
    Application review processing$2,000
    Analytical Services 
    Additional customized data processing$150 per hour depending on the expertise of the analyst
    Data Analysis$150 per hour depending on the expertise of the data analyst

    Note: Fees are also based on whether the researchers are actively involved in CPCSSN in the following ways: CPCSSN Network Director, Substantial participation in CPCSSN (e.g. submitting electronic medical record data, chief data science lead of Pan-Canadian CPCSSN), student.  Industry-funded project fees are negotiated separately under a “fair market value” model in consultation with the CPCSSN Steering Committee.

  • Who can access CPCSSN Data?

    Access to the Canadian CPCSSN data repository is available to researchers located at any of the following eligible institutions:

    • Canadian post-secondary institutions and their affiliated institutions including hospitals and research institutes; or
    • Canadian non-governmental, not-for-profit organizations (including community or charitable organizations) with an explicit health research or knowledge translation mandate; or
    • Canadian federal and provincial/territorial government departments or agencies, including regional health authorities, when specific programs of those departments or agencies do not fund the activity that forms the subject matter of the grant; or
    • Other organizations, as determined by CPCSSN, on the condition that the research or research-related activity falls within the principles espoused by publicly funded organizations such as CIHR
  • The Cost Quote
    Concrete cost quotations are only available after a Data Access Request (DAR) has been approved. The reason for this delay is because projects may change significantly from time of grant application to time of approval. CPCSSN will prepare a Price Quote. The Researcher must sign the Price Quote in acceptance of the cost. The Researcher must also sign a CPCSSN – Researcher Services Agreement which formalizes the requested services. There may be multiple Price Quotes for a single project, depending on the anticipated number of amendments, data deliveries or extensions desired.
  • Amendments
    Researchers may make a request to change key aspects about their projects, such as: Data updates or more years of data, data files and/or fields requested, research questions posed, change in study population. These require a formal application to CPCSSN in the form of an amendment. New service charges apply for amendment applications, and confirmation of funds will be requested by CPCSSN.
  • Researcher driven changes post-application
    Changing the DAR once submitted requires additional work by CPCSSN. Requesting modifications to a DAR after its submission to the CPCSSN, but before its approval, may incur a fee up to $2,500.00 depending on the complexity of the project and the requested modification(s).

Through semi-annual extractions, CPCSSN gathers primary care EMR data from 1200 providers and holds 1.8 million records. During each extraction, records are cleaned, coded, and de-identified. CPCSSN continuously develops its toolset to improve data quality by coding variables, and adding case definitions.

To help researchers better understand the CPCSSN data holding and how it can be used in research, we have developed several resources available below:

  • Case Definititions

    CPCSSN continually develops chronic disease case definitions. These case definitions are available to researchers to aid in their use of CPCSSN data.

  • Data Dictionary

    During each semi-annual extraction cycle, our data managers develop a data dictionary which describes each table and variables within.

  • Data Table FAQ

    To suppliment the CPCSSN data dictionaries, a table by table FAQ has been developed to provide brief descriptions of the usability of each data table.

  • Sample Data Set

    Download a sample set of CPCSSN data is available to begin exploring what type of data is available and how tables relate. The sample data of five patients representative example and is available to download as a SQL file.

  • Tutorials

    COMING SOON! Our senior analyst has compiled years of experience to develop a series of tutorial videos to guide researchers new to CPCSSN data.

  • Publications and Reports

    Each year researchers throughout our networks conduct studies using CPCSSN data. We have provided a a comprehenvive list of these publications. In addition to the publications available, our senior analyst develops a yearly report on targeted topics such as data quality, representativeness, prescribing habits.

Linkages and Extractions

  • What is data linkage and how does it relate to CPCSSN?
    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.
  • What happens when you do data extraction refresh?
    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.
  • What data are extracted from patient records?
    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.
  • How often are data extracted?
    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.

Support for researchers is included in your SRE access. Below are commonly used documents and information to help get you started.

  • What is the Secure Research Environment?
    The CPCSSN Secure Research Environment (SRE) is a self-contained secure Windows project workspace that is provisioned with all of the tools required to perform data analysis on the CPCSSN data. The SRE ensures data security through processes such as strict firewall settings, VPN access, and disabling network access.
  • What software is available in the SRE?
    Researchers are provided with a suite of analytical and development tools to conduct their studies. Software provided by CPCSSN includes:
    • SAS
    • R/R Studio
    • Stata
    • Anaconda
    • Jupyter Notebook
    • Sublime Text
    Researchers may request additional software applications be installed in their environments by submitting a request through the link below. [LINK]
    *Researchers must provide their own licenses for software not already present in the SRE.
    ** Software that utilizes concurrent licensing (i.e. SPSS) cannot be used due to disabled internet access.
  • How do I add or change users?
    The SRE includes access for 3 users. We understand that throughout a study lifecycle, these users may change. To add, swap, or remove users, the PI must complete and submit an SRE User Form. [FORM LINK or BUTTON] Please submit all requests through our support portal and include your CPCSSN project number (ex. 2023SRE123) – PORTAL
  • Can I import files to the SRE?
    Yes! Users are welcome to have files imported into the SRE to aid in their analysis. 1)Steps to import into the SRE through a secure portal:
    1. Add your file to an archive (.zip or .7z)
    2. Connect to the VPN and visit https://10.15.1.150/portal/
    3. Add your file to the upload portal, add a password (please use all lowercase), and select send.
    4. Copy the download link and delete link.
    5. Submit your request through our support portal linked below. Ensure you include:
      1. CPCSSN Project number (ex. 2023SRE123)
      2. download and delete links
      3. the password you used when sending the file.
    PORTAL 2)Steps to import a file …