Data Access Fees

Policy

The Canadian Primary Care Sentinel Surveillance Network (CPCSSN) is a network of networks. It has both core and distributed functions. CPCSSN’s core functions include increasing data quality for purposes of disease surveillance, practice quality improvement, research. Access to primary care electronic medical record data are made possible by the ongoing acquisition & standardized processing of electronic medical record data across Canada.

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

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 two years are charged at the outset of the project, with additional Secure Research Environment needs (Table 2) being charged as needed.

Feasibility and cost estimate letters

Feasibility and cost estimate letters (FCEs) CPCSSN can provide a Feasibility and Price estimate letter that researchers can append to their grant applications. CPCSSN recommends that researchers submit a feasibility and price estimate request for budgeting purposes. This is an estimate of the CPCSSN price based on the researcher’s rough project parameters described in the feasibility and price estimate request form. CPCSSN staff may provide Researchers with a letter that indicates the feasibility of data access and/or linkage for their specified research topic, and an estimate of costs that may be used for budgeting.

• Feasibility cost estimate letters are project and grant specific; they should not be re-used for multiple grant applications
• Feasibility cost estimate letters do not include costs for data or other services that are not provided by CPCSSN
• Feasibility cost estimate letters are not approval letters; CPCSSN has no ability to influence approvals
• Feasibility cost estimates are broad in order to accommodate possible changes in the project through the grant application process
• Researchers must include the amount on the FCE in their budget submitted to the granting agency
• Projects that have not requested an FCE letter will be issued one upon initial work with CPCSSN on the DAR
• CPCSSN has made a commitment that charges will not exceed the amount on the FCE letter, provided the project remains substantially similar

CPCSSN is usually able to provide a feasibility cost estimate letter within two weeks.

Researchers are required to show proof of financial support, in order to proceed with the DAR process. Researchers must still show proof of peer review in order to satisfy DAR requirements.

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).

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.

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.

Project Service Fees

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. The table 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 two years are charged at the outset of the project, with additional Secure Research Environment needs being charged as needed.

CPCSSN Fee Schedule

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.