Our goal is to help you access the data you need while ensuring its security and appropriate use.
There are well-defined processes in place for requesting data from BC Children and Women's Hospital (C&W). By following our instructions closely, providing all supporting information required and responding promptly to any requests for further details, you can help ensure the fastest turnaround on your data request.
C&W works to process data requests efficiently, in collaboration with data requesters. We have specific targets for turnaround times on inquiries and data requests:
The complexity of the data requested and volume of requests will affect the timelines (e.g. aggregate data calculated from
C&W data holdings vs. highly sensitive record-level data with external data linkages (see
definition of highly sensitive data) record-level data with external data linkages). Turnaround time is typically 2 weeks but may vary depending on the urgency and workload.
You can learn more about
what data are available from C&W. If you need help in determining your exact needs, C&W can help you align your ideas and questions with available data. To request assistance, submit a
Data Access Request form and we'll follow up with you.
Please note that if you are requesting C&W data for linkage, you will typically be required to send your own data to be linked by C&W. We review data linkage requests on a case-by-case basis, considering the type of data being requested, the linkage plan and the data management plan.
1Submitting your data request
Data requests are submitted online using C&W's
Data Access Request form. This form requires you to:
- describe your data request
- provide a date for when you need your data
- provide contact information so we can follow up with you
You’ll receive an email with a copy of your data request and a unique project number. You’ll need the project number for further C&W correspondence and project tracking.
Typically, we’ll have some follow-up questions for you before your request can be finalized and ready for review.
For transparency purposes, C&W routinely provides summaries of all the data requests we receive (including research requests) to various leaders across PHSA’s programs. Reports list project details such as the title, requester name and data request status.
If you have a research request for which you're certain that C&W has the data you're seeking, you can bypass the Data Access Request form submission and go straight to completing the
Research Data Access Request form.
If you're not certain C&W has the data you're seeking, complete the Data Access Request form and someone will get back to you.
The Research Data Access Request form asks for information such as:
-
details about your data requirements and your plans for data use, storage, management and access
-
details about who will have direct access to the data
-
a copy of your project protocol
-
a copy of your
Research Ethics Board certificate and application. If you’re in the process of requesting a certificate, please indicate this on the form.
2Review and approval process
C&W uses a risk-based approach known as proportionate governance when reviewing all data access requests (see definition of proportionate governance).
A standardized Data Access Risk Assessment Framework supports C&W to uphold its responsibilities regarding data in its custody (see definition of Data Access Risk Assessment Framework). The type of data requested and the environment in which the data will be stored are key considerations. Any specific risks identified will each require a plan for reducing the risk (mitigation strategy). Depending on the type of risk, the mitigation strategies required may be quite straightforward (e.g. the project requires sign off from the Principal Investigator) or more complex (e.g. the project needs a full Privacy Impact Assessment (PIA) (see
definition of Privacy Impact Assessment).
If our risk assessment determines that your project requires a PIA, C&W will notify you to work directly with the PHSA Information Access & Privacy (IAP) Office to get your PIA completed and approved by them.
Once you’ve fulfilled all risk mitigation requirements identified through the review process, C&W will approve your data request and generate a Data Access Agreement for you to sign (see definition of Data Access Agreement).
In addition to any specific requirements, the Data Access Agreement contains a number of standard terms and conditions that you must meet (see
definition of Data Access Agreement). They include:
-
Requesters shall safeguard data entrusted to them and not misuse or wrongfully disclose such data.
-
Data are to be used only for the objectives approved by C&W in the Data Access Agreement.
-
Data will be retained for a limited time, normally set at an initial three years, with the possibility of extension with approval by C&W and other applicable parties.
-
Any requested changes to objectives(s), personnel or time frames will be submitted to C&W for review and approval.
-
If Research Ethics Board approval is required, the certificate must remain current throughout this data retention period.
-
Data are to be accessed only by named staff as listed on the Data Access Agreement.
-
All named staff, including the PI, must read, agree and sign a
Confidentiality Undertaking form.
-
If there is intent to publish, C&W will be informed of all pre-publication materials prior to submission by completing the
Intent to Publish form.
-
The disclosure of information will comply with all relevant local policies, including C&W and
PHSA policies.
If you're not satisfied with the results of the risk assessment, you can apply for an appeal. The request for appeal – along with any additional supporting information from the data requester – is sent to the data steward for a final decision (see
definition of data steward).
3
Receiving C&W data
Once you’ve returned the signed Data Access Agreement, C&W can begin fulfilling your request.
Data will be transmitted to you according to the terms outlined in the Data Access Agreement.
4Using C&W data
C&W remains a resource to you even after we’ve fulfilled your data request. Data interpretation services or consultations are available on request to help you make the best use of your data. Please contact us at
pmr@phsa.ca at any time.
You’ll also have ongoing requirements regarding the use and disclosure of data and results.
If you wish to make any change to the plan or conduct of your study after it has been approved, you’ll need to submit an amendment to PMR for assessment. Amendments to studies should be changes within the scope of the original study, not new studies that are simply related to the original study. Examples of amendments include request for additional data fields or years, or expansion of your study population.
If you wish to make any change to the plan or conduct of your study after it has been approved, you’ll need to submit an amendment to C&W for assessment. Amendments to studies should be changes within the scope of the original study, not new studies that are simply related to the original study. Examples of amendments include request for additional data fields or years, or expansion of your study population.
Submit amendments via the
Amendment Request form. You’ll need to provide:
-
your unique project number
-
a description of the amendment
-
a detailed rationale for the request
Amendments will be re-reviewed using the Data Access Risk Assessment Framework. Depending on the request, a new Data Access Agreement may be required.
If you're adding or removing project members, you’ll need to advise C&W by submitting a
Changes to Project Members Request form.
If there is intent to publish your results, you’ll need to inform C&W of all proposed publication materials prior to submission (generally five business days, but this varies depending on the type of output; more information can be found on the Intent to Publish form) (PDF). You can do this by completing and submitting an
Intent to Publish form (PDF).
5Project closure
C&W will send you an email notification 60 days before your project closure date. If you need to keep the data beyond this date, you can request an extension by completing and submitting a
Data Retention Extension Request. You’ll need to provide:
-
a progress report
-
rationale for extending the data retention period
-
ethics renewal for the extended period, if applicable
If you’re ready to close your project, you’ll need to complete and submit the
Project Closure and Confirmation of Data Destruction form. The form describes the process for destroying or returning all data to C&W.
