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Data Requests

Perinatal Services BC (PSBC) supports health care providers, leaders, researchers, and policymakers in their work to improve maternal, fetal, and neonatal health. We are committed to providing access to the data in the custody of PSBC for bona fide, public-interest research purposes, surveillance, program delivery, and evaluation, while at the same time, ensuring protection of the privacy and confidentiality of individuals. 

All requests for data are managed in accordance with the requirements of the Freedom of Information and Protection of Privacy Act (FIPPA) of British Columbia as well as PSBC data access policies and guidelines. PSBC reviews each data request for completeness and content. Only completed applications for data requests will be considered. 

Please note that PSBC reserves the right to decide the acceptability of data requests in its sole and absolute discretion.

Data Disclosure Policy
Please review the PSBC Data Disclosure Policy, which identifies the parameters required when PSBC releases and discloses data.

Cost

PSBC prepares data cuts for external requestors for ad hoc and research purposes on a cost recovery basis.  The cost is based on the nature and complexity of the request and the amount of time required to prepare the data. If you are interested in receiving a cost estimate, PSBC can provide a quote following a consultation with our staff. Please email psbc@phsa.ca.

Turnaround Time

Every effort is made to process data requests in a timely manner. Turnaround time of data requests is dependent on the complexity and volume of data requests.

Types of Requests

Data application process is dependent on the type of data requested:

  • Aggregate Data Requests
  • Research Requests
Aggregate

Summary provincial and sub-provincial data (e.g. total births, total cesarean sections, etc.) do not include personal information or potential identifiers based on combination of variables and pose no potential harm to groups or individuals.

Requested aggregate data are typically used for quality improvement, evaluation, or planning purposes by health authorities and other governmental agencies. In cases where aggregate data are requested for research purposes, such requests will be reviewed by the PSBC Research Review Committee.

Turnaround time is dependent on available staff resources, so please submit requests with as much advance notice as possible. In circumstances where the request is time sensitive, PSBC will try to accommodate if resources are available. 

Aggregate data will not be released if any risk of re-identification of an individual (e.g., small cell sizes, small geographic areas) is perceived by PSBC or if release is not authorized by a health authority(ies). Counts between one and four and rates based on numerators between one and four are not typically disclosed.

Before Submitting Your Request

Before submitting your request, please check the Indicators Index to see if the data you want are already published on our website. If they aren't, then proceed by reading the following:

  • Use the data only for the purpose for which you requested it. Subsequent uses of the received data must be approved by PSBC.

  • Do not use the aggregate information either alone or with other information to attempt to identify an individual, including attempting to decrypt information that is encrypted, attempting to identify an individual based on unencrypted information, and attempting to identify an individual based on prior knowledge.

  • Keep the data in a secure location – the data should not be kept on a laptop or memory stick unless it is encrypted
 

All outputs using approved aggregate data must be submitted for review to PSBC prior to public disclosure. This includes but is not limited to:


  • conference abstracts;
  • presentation of research materials (posters, seminars, lectures, etc.);
  • journal publication;
  • academic thesis or dissertation material;
  • instructional use (examples in lectures and/or lab exercises, etc.);
  • article or op-ed for general public release (newspaper/magazine/social media sites);
  • interview (radio, television, internet, etc.); and
  • external reports.

PSBC commits to review within 14 calendar days. Users are eligible to proceed with public disclosure if there is no response within the given time frame with the following parameters:


  1. Cite Perinatal Services BC - Perinatal Data Registry as the source of the data on any document where you use the data (i.e. written documents, PowerPoint slides, Excel spreadsheet, etc.) using the following format:

    Perinatal Services BC. British Columbia Perinatal Data Registry. Years Provided: (YYYY to YYYY). Resource Type: (Extract or tabulated data). Data Provided on (YYYY). 

  2. The following disclaimer must be used when disseminating or publishing any output based on aggregate data received from PSBC: 

    “All inferences, opinions, and conclusions drawn in this publication are those of the authors, and do not reflect the opinions or policies of Perinatal Services BC.”
 

If you have any questions or concerns regarding your data request, please contact us at psbc@phsa.ca. We will acknowledge your request within two to three (2-3) business days, at which time an estimated turnaround time will be provided. 

Use the button below to submit your data request online.

Data Request Form

Research

Access to record-level data for research and statistical purposes is available by completing:

Aggregate data without personal information that are expressed in summary form (i.e. total births, average age of mother at delivery, total cesarean sections, etc.) are also available for research purposes and must adhere to research material reviews. All research requests are reviewed by the PSBC Research Review Committee on a monthly basis.

Please review the following sections:

To be considered for approval, a request must:


  • be for the time-limited purpose of addressing a specific set of research questions;
  • not involve use of data for administrative or any other non-research purpose, or for ongoing programs of research, unless specifically approved;
  • be in the public interest, i.e., improves the welfare of the population;
  • not be for proprietary research, such as research done for commercial marketing purposes;
  • have scientific merit;
  • be accessed only in Canada;
  • meet PSBC’s requirements for data security and confidentiality; and
  • have approval from a recognized research ethics board, as defined by the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans.

Please note that the above requirements are necessary for review but are not exhaustive for approval by the Research Review Committee. Additional requirements may arise that are project-specific. 


Confirmation of your request will be acknowledged within two to three (2-3) business days, at which time you may be contacted for additional information. Please allow a minimum of six (6) months from the date of application to receipt of record-level data for research purposes. 

Filling out a Data Access Request Form takes time, planning, and attention to detail. Timely access to data is affected by inadequately completed applications — please be very thorough in completing the application. If you have questions or are unclear on any aspects of the application process, please contact PSBC prior to submitting your Data Access Request Form for consideration by the Research Review Committee.

Once your application had been approved, you will be asked to sign an Agreement to Proceed with Data Preparation, which will include a quoted fee to complete the data cut. Prior to data being released, you must complete a separate Data Sharing Agreement, and all project members must complete a Pledge of Confidentiality

Please note that all research outputs (including but not limited to journal articles, abstracts, slide decks for public presentations, and reports) must be submitted for review to PSBC prior to public disclosure. PSBC commits to review journal manuscripts within 45 calendar days and abstracts, slide decks, and poster presentations within 14 calendar days. Researchers are able to proceed with public disclosure if there is no response within the given time frame.

 

To make an amendment to a previous Application for Access to Health Data for Research, you must complete an Amendment to Data Access Request Form


Amendments to studies should be changes within the scope of the original study. Changes such as requesting additional variables, addition/removal of project members, or a change to the requested data retention date must be submitted as Amendments. 


The Amendment form and accompanying documentation (if applicable) should be emailed as a package to psbc@phsa.ca


New studies that are related to (but not included in) the original studies should be submitted as a new DAR. 

Also, projects that undergo changes to data collection methods or study populations should be submitted in a new DAR for review and approval. 


ALL amendments are assessed for an amendment fee of $1,000 plus applicable taxes. If your amendment results in significant changes to the data extraction, PSBC reserves the right to assess additional cost for the data extract.

 
  1. Review Frequently Asked Questions (FAQs) for Access to Health Data for Research.
  2. Complete the Application for Access to Health Data for Research Purposes (Data Access Request Form - DAR) and Appendix A: BCPDR Data Field Checklist.
    Note: Older versions of the DAR will not be accepted. Please ensure you use the most current version linked above (revised August 2014).
    • Create a digital ID by clicking in the Signature field. 
    • Select an existing digital ID or create a new digital ID 
    • Follow the steps required to assign a digital ID, including the addition of a password (6 characters) 
  3. After creating a digital ID, you will be prompted to save the form
  4. Email completed DAR to psbc@phsa.ca
  5. Applicant will be contacted after application has been reviewed by PSBC staff. 
  6. Requests will be reviewed by the PSBC Research Review Committee, which meets on a monthly basis. The committee may have additional questions, in which case the applicant may be contacted for further clarification of the request. 
  7. Once approved, the applicant must sign an Agreement to Proceed with Data Preparation, which includes agreement to pay any associated fees. An estimated turnaround time will also be provided.
  8. Before any health data are provided, the applicant must sign a Data Sharing Agreement, and all project members must sign a Pledge of Confidentiality
  9. The applicant will be contacted when the request is complete, and data are ready to be released.
  10. After approval, any changes to the research question(s), researcher(s), or time frames, as well as new requests for additional data elements or years must be submitted as an Amendment to Data Access Request Form for review and approval by PSBC.
  11. When the data retention period has expired, the applicant must confirm destruction of all data using the Project Closure & Data Destruction Form
 

Document

  Version &
  Revision Date

FAQs - Data Access Requests (DAR) for Research Purposes  Revised

  V1.5
  August 2017

Application for Access to Health Data for Research Purposes (Data Access Request [DAR] Form)

  August 2014



BCPDR Data Field Checklist Revised
(Appendix A to DAR Form)

  V1.2
  May 2017

Amendment to Data Access Request Form


  V1.5
  August 2014


Data Sharing Agreement Revised


  V1.7.1
  July 2017

Pledge of Confidentiality (Schedule B) 


  V1.5
  July 2015

Project Closure & Data Destruction Form


  V1.2
  October 2013

 
If you have any questions or concerns regarding your data request, OR you would like to submit your Data Access Request Form, please contact us at psbc@phsa.ca.

Research



Last Updated: Thursday, November 27, 2014

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