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.
When HELP receives any personal information, either for its Early Child Development (ECD) or Middle Child Development (MCD) Research Programs, it is viewed only by a limited number of HELP staff, on a “need to know” basis. Neither the EDI nor MDI questionnaires provide HELP with names or addresses of children. Some identifier data, such as postal code and dates of birth, are collected 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.
Individual, identifiable data gathered from the EDI and MDI questionnaires are never released. In addition, to further minimize any re-identification, HELP does not include data from “small-cell” groups (i.e. geographical areas with fewer than 35 students). Additional measures are also taken to ensure HELP safeguards personal information. HELP’s ECD and MCD Programs 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. The 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.
Sometimes researchers want to “link” the data HELP gathers to other data, so they are able to 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 and MDI data to other databases provides insight into groups of children’s development and helps to answer important research questions.
Linking data is only permitted under strictly approved and controlled circumstances. HELP Researchers follow the ECD and MCD Programs of Research that are approved annually by the UBC Research Board of Ethics. Researchers must also have the approval of the Data Steward of the secondary data set to which they hope to link. This approval process is fully outlined on PopData’s website. Researchers do NOT receive Identifier data (date of birth, postal codes).
HELP’s Privacy Officer is available to answer any questions you may have about how HELP safeguards research data and the privacy of individuals.