Safeguarding Personal Information
HELP’s research depends on quality and accurate data, including personal information, so safeguarding that data is a responsibility HELP takes very seriously. The BC Freedom of Information and Protection of Privacy Act (FIPPA) defines personal information as “recorded information about an identifiable individual other than contact information”.
HELP follows the highest standards available, many of which are required by law. To ensure the privacy and confidentiality of individuals, all of HELP’s systems and processes meet or exceed the requirements of provincial and federal privacy legislation.
The Process
When HELP receives any personal information for its Early Child Development (ECD) Research Program, it is viewed only by HELP staff who need to see it, on a “need to know” basis. The EDI or MDI questionnaires do not provide HELP with names or addresses of children. Some identifier data, such as postal code and dates of birth, are collected on the EDI form to prevent duplicate records of a student.
At HELP, the identifiable personal information is removed, encrypted and stored separately from the rest of the content data that is used for population-level research by HELP researchers. The data is stored by Population Data B.C. in their highly secure data storage facility. Please visit Population Data B.C.’s website to learn more about them and their privacy and data protection mandate.
Further Safeguards
Individual, identifiable data gathered from the EDI or MDI questionnaires are never released. In addition, to further minimize any re-identification, HELP does not include EDI data from “small-cell” groups (i.e. schools with fewer than 35 students). Additional measures are also taken to ensure HELP safeguards Personal Information. HELP’s ECD Program of Research must undergo rigorous scrutiny by the UBC Research Ethics Board (REB) each year for approval to continue this research, including approval for any changes to the research program. REB’s ethics review process is governed by the Tri-Council Policy Statement on Ethical Conduct for Research Involving Humans. The Board’s scrutiny includes examining HELP’s safeguarding measures and practices. Information Sharing Agreements between HELP (UBC) and the public bodies providing personal information to HELP are also signed. These agreements are legal contracts that specify the safeguarding measures HELP must take to protect personal information.
Linking Data
Sometimes researchers want to “link” the data HELP gathers to other data, so they can study certain trends in childhood development and contribute to improvements for children in B.C. What this means is that data about one population group is connected to other data about that population group in order to identify trends or patterns within the population group. These projects may include, for example, linking to census data, health records or other education records. Linking the EDI data to other databases provides insight into groups of children’s development and answers important research questions.
Linking data is only permitted under strictly approved and controlled circumstances. HELP Researchers follow the ECD Program of Research that must be approved annually by the UBC Research Board of Ethics, and limits linkage to what is approved each year. Researchers also must have the approval of the Data Steward of the other data set they want to link to the EDI data. The approval process for researchers to follow to link data is fully outlined on PopData’s website here. Researchers do NOT receive Identifier data (date of birth, postal codes).
Do you have more questions?
HELP’s Privacy Officer is available to answer any questions you may have about ho HELP safeguards research data and protects the confidentiality and privacy of individuals.
