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?
- 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.
Recent amendments to the Health Information Act allow for the formation of a health information repository which could allow expanded use of Alberta Netcare information for research. Alberta Health is also investigating the possibility of connecting data repositories with the ministry Business Intelligence systems. These systems are applications that draw specific information out of a database so that the data can be used in evaluating health system performance. In the case of EHR information, data is presented in a way that allows healthcare decision makers at Alberta Health to analyze the trends in the health system and make decisions to improve services to 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.
