Stage 6: Data analysis and Pre-publication Review

 

Where does data analysis take place?

PopData projects

For PopData projects Research Extracts will be housed on the PopData Secure Research Environment (SRE) unless otherwise authorised (see below).

The SRE is a secure private cloud accessible only via an encrypted Virtual Private Network (VPN) through a firewall and use of a YubiKey® for two-factor authentication. Go to: Secure Research Environment for more information on the SRE.

HDPBC projects

For HDPBC projects, the data will be provisioned via the HDPBC Secure Research environment unless otherwise authorised (see below)


PLEASE NOTE: Storage of data is as described and approved in the DAR. Please remember that FIPPA not only prohibits the storage of Personal Information outside of Canada, but it also prohibits access, which includes viewing. For example, if your data is on the SRE or a similar server you are prohibited from accessing that server from outside of Canada via VPN or any other method. Although the data remains on the server within Canada, your viewing of the data constitutes access outside of the country.

Available software and utilities

For a complete list of the tools and utilities available on the PopData SRE and the HDPBC SE, go to: Data access and click on What tools are available in each stream for statistical analysis?

Authorisation to house research extracts outside the PopData SRE or HDPBC SE

Researchers who wish to store, access and analyse their data extracts outside the PopData SRE or HDPBC SE need to ensure this is clearly identified in the Data Access Request (DAR). To request authorisation, Researchers will be required to provide:

  • A written rationale/justification for why they cannot use the SRE/SE.
  • Details of the physical location(s) where research data will be used or accessed, including physical security measures in place to protect workstations, hard copy and source media. 
  • Details of network security measures in place if data will be stored on a network or system to which individuals other than the identified project personnel can have access. 
  • Details of the security measures taken to protect data residing on a personal computer if data will be stored on or accessed from the hard drive of a PC.

 

What will the data look like?

Research team members are responsible for analyzing the data released to them. The data sets resulting from a request are large, often comprising hundreds of thousands of records spanning multiple files. Data Access Unit staff will provide support related to data files and fields if necessary, but it is expected that someone on the researcher team will have the capability to carry out data analysis.

Researchers finding that data analysis requires more resources than anticipated may consider hiring someone with data analysis experience. Data Access Unit staff may be able to put Researchers in contact with people with relevant experience.


PopData projects

The amount of data received and how it's structured depends on the number of data files and fields requested, the number of years requested, and the size of the requested cohort.

The data is provisioned as multiple files, not as a database. For example, a request for data from MSP, PharmaCare and Hospital Separations, spanning calendar years 1996 to 2000, would generally result in a separate file for each program area in each year (15 files in total). Each record is allocated a non-meaningful project-specific study identification number to enable identification of records belonging to the same individual across program areas and years.

Data are provided as ASCII flat files, as this format can be imported into a wide variety of software programs for analysis.

In addition to the data, a data layout and data dictionary for each file is provided. The data layout contains the length, start position, and end position of each field in the requested data file. The data dictionary provides coding information that will assist in interpreting the data.

HDPBC projects

The data is provisioned in relational database with access to pre-loaded views based on the approved request.

The metadata information for each of the data sets is available inside the Secure Environment via Mauro application.

Ongoing PopData/HDPBC project maintenance

DAR amendments

Researchers with an approved DAR sometimes need to amend the original request while working with the data. In many cases, a DAR amendment is required. Examples of DAR changes requiring an amendment include:

  • Addition or changes of research objectives.
  • Changes to the study population.
  • Addition of data sets.
  • Addition of non-core data fields.
  • Changes to the study time period (e.g. additional years of data).
  • Addition of funding from for-profit organizations.

Researchers working on research objectives outside of the ones specified in the approved DAR or attempting to incorporate unapproved data in the analysis are in breach of the Research Agreement. If your proposed changes do not fall into one of the above categories or if you are unsure whether an amendment request is required, please contact the Data Access Unit (DAU).

Researchers may request an amendment to their approved project by completing the amendment request form and submit the request by email to the DAU. The DAU will forward the amendment to the Data Steward(s) for review and approval.

Please note that a DAR amendment often requires amendment or update to the research ethics board (REB) approval. Before initiating the PopData/HDPBC amendment process, please review and amend the project’s REB approval accordingly. When submitting a DAR amendment, Researchers are required to provide the current REB approval documents as supporting documents.

Amendments requiring additional data provisioning will incur additional costs and require a new Cost Quote. Data provisioning can be both costly and time-consuming, so it is recommended that you make absolutely certain that your study population description is correct and your DAR is complete and accurate before submitting the Data Access Request (DAR).

Student access to the data of an existing project

Student requests to use the Research Extract released under an existing project (typically their supervisor’s DAR) for their project, thesis, or dissertation must submit a ‘Student DAR’ to the Data Stewards via PopData and obtain Data Stewards’ approval before the student engages in the work. The Student DAR form can be downloaded here. Submit the completed Student DAR and required supporting documents to the Data Access Unit by email.

Addition of study team members

All study team members must be included in the DAR, whether or not they require access to record-level data on the Secure Research Environment (SRE) or the HDPBC Secure Environment. Researchers should submit an online Addition of Team Members Application Form to PopData as soon as they receive confirmation that new team members are joining the project. Note: Updated Research Ethics Board approval is required (to include the new members) BEFORE submitting an Addition of Team Members Application Form.

All Addition of Team Member requests will be reviewed by PopData and the Data Stewards.

Data retention extensions

Researchers are initially permitted access to the data extract provided by PopData for up to three years after PopData provides the first set of data, as long as privacy conditions are met. Researchers who need additional time to analyse the data will need to submit an Amendment to Extend the Data Retention Date request. Researchers also need to provide a Progress Report with the extension request.

Researchers need to provide a rationale for extending the data retention period, and confirm that they have accompanying ethics renewal for the period, if applicable.

Submit all amendment requests via email to the DAU. Data Access Unit staff will coordinate the review of the amendment request by the Data Steward(s).

Pre-publication Review

In signing a Research Agreement with a public body for access to data, Researchers commit to sending Research Materials (previously called “pre-publication materials”) to the public body in advance of public dissemination. In order to enhance communications and compliance around review requirements for the public disclosure of Research Materials, a single set of review requirements has been agreed upon by Population Data BC (PopData), the Health Data Platform BC (HDPBC) and our Data Steward partners. For more detail on this process, go to: Publishing Research Materials and Data Steward requirements.

 

DARs/Projects snapshot

Total number of DARs/Projects currently with PopData:

472

The breakdown:

DARs in preparation/review

69

Projects with amendments in preparation/review

26

DARs in post-approval

31

Projects with data being prepared

32

Projects being maintained
(inc. 9 DASH, 18 DI Program and 3 ODC projects)

289

CaraSpace projects

25

Last revised March 15th, 2024

Tools and resources

We provide a range of tools and resources for researchers for use at different stages of the data access process.

more information

Need pan-Canadian data?

The Data Access Support Hub (DASH) is a one-stop data access service portal for researchers requiring multi-jurisdictional data in Canada.

> more information