Using EHR Data for Research
In Alberta, there are processes that researchers must follow to gain access to individually identifying health information.
There are also criteria that researchers must meet in order to gain access to patient data in Alberta Netcare.
Review the information below for details.
Can the EHR data be used for research?
Alberta Netcare information may be used for research only when the research meets all applicable legislative and organizational requirements, including:
- The research has a clear patient care or health system improvement purpose (e.g., clinical trials, program evaluation).
- Explicit patient consent has been obtained, where required.
- Approval is obtained from a Research Ethics Board (REB).
- The research proposal is accepted by an authorized custodian who is willing to provide the information.
- A research protocol summary is provided in a form acceptable to the authorized custodian.
Recent amendments to the Health Information Act also allow for the formation of health information repositories, which may permit broader use of Alberta Netcare information for research and analysis. PPHS is exploring linking data repositories with Ministry Business Intelligence systems, which allow authorized decision-makers to analyze trends in the health system and make informed decisions to improve services for Albertans.
What is the process for obtaining data from the Ministry of Health or Alberta Netcare?
(1) For a researcher to make a research request to the Ministry of Health to access individual level health information:
- See the Health Research in Alberta website for details on the data available and the process for requesting data: https://www.alberta.ca/health-research.aspx
Researchers may also be interested in the Ministry's interactive Health Data Application, which provides a variety of statistics, such as immunization and mortality, regarding the health of Albertans.
(2) For a researcher to obtain data from Alberta Netcare:
Request for access to Alberta Netcare for research should be directed to Alberta Health Services: Research.Administration@ahs.ca
It is important to note that current policy regarding access to health information from Alberta Netcare only authorizes disclosure where explicit consent to participate is obtained from the individual who is the subject of the information.
The following conditions must be met before Alberta Netcare information may be used for research purposes:
- research must provide treatment and care to patients (such as through clinical trials),
- has explicit patient consent of the individual who is the subject of the information,
- has research ethics board approval
- has a proposal accepted by an authorized custodian who is willing to provide information for research purposes, and
- the research has been presented through a research protocol summary in a form acceptable to the authorized custodian.
It is important to note that the Health Information Act designates the disclosure of information for research purposes as discretionary
Additional questions about the processes outlined above should be directed to the Health Information Act Helpdesk: hiahelpdesk@gov.ab.ca or 780-427-8089
