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Data Request

We are committed to provide access to transplant and donation data while ensuring the protection of the privacy and confidentiality of personal information of donors and recipients.

BCT is guided by the Provincial Health Services Authority (PHSA) and BCT Health Information Management policies for the collection, processing, release, retention and security of personal and aggregate clinical information. 

All requests for data must be submitted in writing using the Data Request Form. Please be aware that there may be fees associated with data requests for research purposes. After you submit your request, we will provide a fee assessment. 

Time frame

Most data requests will be processed within 2-4 weeks. The time frame for processing requests depends on the complexity and volume of requests. All data requests are reviewed prior to processing. We will acknowledge your request within three business days of receiving the data request.

Type of request

The data application process depends on the type of data requested:

 
This is a summary of provincial data (ie. annual number of transplants) that does not include personal information or pose any potential harm to groups or individuals. Aggregate data is often requested for program management and quality improvement purposes by health authorities and other government agencies.

Most of this type of information can be found in the Statistics section of our website. If you are requesting data that is outside the parameters of the data on the website, then please complete and submit the Data Request Form.

Content

 
A research request involves access to identifiable or de-identified data about BCT patients and requires approval from a Research Ethics Board. A Data Request Form and a Research Information Sharing Agreement must also be submitted. 

The Research Information Sharing agreement must be completed and signed by the principal investigator and the Provincial Operations Director of BC Transplant. The key areas of the information sharing agreement include a copy of the research protocol, clinical research ethics board approval, and in cases where personal identifiable information is required, a patient consent form is needed.

Once completed, please send a copy
to: Email: datarequest@bct.phsa.ca or
Fax: 604.877.2200.

 
Research studies that request identifiable patient data will be required to complete an Information Sharing Agreement (ISA). The ISA is an agreement between the Principal Investigator (PI) and BC Renal (BCR), to access data that is within the PROMIS database, which also includes transplant patient data. The signed and completed ISA will be required before access to data or researcher access to PROMIS can be provided. A BC Renal ISA template form is provided by PROMIS. Initial contact with PROMIS can be made through the PROMIS JIRA Service, creating a ticket online (through the PROMIS portal - Service Desk) or by emailing Support at support@bcpra.ubc.ca. 

To complete the ISA, the Principal Investigator (PI) of the study is required to obtain review and approval through their Research Ethics Board (REB). Once REB approval has been received the ISA can be completed along with the other requested appendix documents and sent to PROMIS for final BC Renal sign-off. The ISA document is required to be completed with attachments provided to PROMIS as noted in the ISA along with the highlighted sections completed which pertain specifically to the research study. Only once the ISA is signed by the PI for the particular research study and by the BC Renal Data Steward, can the research data be extracted for the PI.

Once an ISA is in place for research data, data requests can be sent to PROMIS by completing a JIRA Service ticket under Requests for Information, by using the Request for Information form (found under Forms on the PROMIS portal page) or by sending the attachment to the Support email at support@bcpra.ubc.ca, which will also create a service desk ticket. 

Form: ISA Form



Publication and distribution

Prior to publication BC Transplant needs to be notified and recognized as the data source in all publications.

If you have any questions or concerns regarding your data request, please contact us at datarequest@bct.phsa.ca.
SOURCE: Data Request ( )
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