SIDR is a research data repository housed at the University of Prince Edward Island. SIDR is managed by the Centre for Health and Community Research (CHCR).
SIDR has been established through agreements with PEI Department of Health and Wellness and Health PEI. SIDR operates in compliance with the Health Information Act and the Freedom of Information and Protection of Privacy Act.
SIDR is aimed at providing researchers with access to administrative health data, as well as data from other government departments. This facility will allow researchers at CHCR and UPEI, as well as , to conduct research aimed at improving government services and the lives of all Islanders.
Administrative health data is information collected primarily for administrative (not research) purposes. These data are collected by government departments and other organizations for the purposes of registration, transaction, and record keeping, usually during the delivery of a service. Examples include patients’ demographics (e.g., age, sex) and residential location (i.e., postal codes), types of health services used, diagnoses, prescriptions, lab results, etc. Other information on social determinants of health may also be included (e.g., education, income level, housing conditions).
The data collected, used, and disclosed by SIDR is considered de-identified Information. De-identified information is personal health information that has been stripped, encoded, or otherwise transformed so as to ensure that the identity of the individual who was the subject of the personal health information cannot be readily ascertained from the de-identified information. The personal health information provided to SIDR does not contain names or street addresses and the health number has been replaced with a random identifier number.
Highlights
- SIDR only stores de-identified data.
- We only store what is necessary and lawful for identified purposes. We also only disclose data that is necessary for the proposed research.
- Researchers must provide a rationale for requesting data access and must be approved prior to accessing the data.
- Researchers can only access data in person, from our secure facility.
- Our Procedures & Processes are publicly available.
For more details, see our privacy FAQs below:
SIDR is a research data repository, under the Health Information Act (PEI). This designation allows us to collect, use and disclose personal health information, which is available in administrative health data, for specific research purposes. We completed a Privacy Impact Assessment that was reviewed by the Privacy and Information Commissioner of PEI to ensure that it complies with the Health Information Act and we have established the required security and privacy safeguards to protect the data in our custody.
As research data repository, we can use your information to:
- conduct and facilitate research to describe and explain health care patterns and profiles of health and illness
- assist in the evaluation or monitoring of health care service planning or the delivery of a government service, or
- facilitate research between or among areas such as health care, justice, education, and social services
We will never use your information for marketing or other undisclosed purposes.
The de-identified information we collect comes mainly from Health PEI. We may receive additional administrative data from other government departments, public bodies, or organizations.
We have developed physical, technical, and administrative safeguards to protect the data within SIDR. For example,
Physical safeguards
- Access to our facility is restricted and monitored.
- Researchers can only access data in-person. There is no remote access.
Technical safeguards
- Our servers only transmit data to local workstations, and the data is encrypted while in transit.
- There is no data connection with any other network or service.
- Workstations are protected with unique passwords and anti-virus software.
- We audit and monitor our systems regularly.
Administrative safeguards
- We comply with various legal agreements, procedures and processes to collect, use, disclose and protect the data housed at SIDR.
- Researchers who wish to access these data must go through a rigorous application process and must be approved prior to accessing the data
- Researchers and staff at SIDR must receive privacy training prior to accessing the data
We only grant data access based on pre-determined roles and projects.
No. SIDR only receives de-identified information. Before SIDR receives any personal information, all direct identifiers such as names, street addresses, and health card numbers are removed from the data.
After a research project is completed, SIDR staff check the research results thoroughly to ensure personal information cannot be re-identified. Results cannot be released outside of SIDR without being reviewed by SIDR staff.
Only SIDR staff and approved researchers can access the de-identified data we have about you. To access this information, researchers must go through a rigorous research application process and must obtain approvals from the UPEI Research Ethics Board, the PEI Research Ethics Board, the SIDR Data Release Committee (PDF), and the UPEI Office of Research Services. SIDR does not share your information with anyone else.
No. We only collect data that has been de-identified. There are no names or other direct identifiers that we could use to identify you.
Yes. To raise a concern or make a complaint, please go to the UPEI Access to Information and Privacy Office webpage and complete the privacy complaint form.