Research Ethics Boards (REBs) and AHS, as data custodians, have different responsibilities under the Health Information Act when health information is requested for use and disclosure for clinical research purposes.
As custodians of health information, AHS must evaluate applications for data for studies approved by Research Ethics Boards (REBs) prior to disclosing health information, performing data matching or any other services requested to facilitate the research project.
If the custodian decides to support the research as requested, the custodian must impose the conditions suggested by the REB and enter into an HIA Research Agreement in which the researcher agrees to:
The most common forms to access data include:
Data can often be extracted and linked for research purposes from AHS clinical and corporate systems.
Metadata for the AHS Data Reporting Repository (AHSDRR) is available on AHS Insite (please search “Research” on Insite for further information).
Paper-based health records can be provided to researchers at any facility across the province.
To facilitate access, make a plan for how you are going to identify the charts that you need and document this plan in your proposal and your ethics application.
Keep in mind it’s possible to generate a list of patients’ Personal Health Numbers that meet the criteria for your study (if consent has been waived) and provide it to Health Information Management on your behalf. If you recruit patients directly, you may provide the Personal Health Numbers to Health Information Management.
When requesting charts, be sure to note whether you want charts for each patient from more than one facility/zone and what date range you need the information from.
AHS has many different clinical and corporate systems to collect information to support patient care and health service delivery.
Each system has a Privacy Impact Assessment (PIA) registered with the Office of the Information & Privacy Commissioner that determines whether and how this information can be used, including for research purposes.
Typically, the PIAs do not permit direct access to EMR systems for research purposes. The few exceptions that currently exist permit researchers who already have access for treatment and care purposes to use the system for research with patient consent.
Screening patients using point of care systems is typically not permitted – even when consent has been waived by the REB.
Please note that if you have requested direct EMR system access in your REB submission, your study will be reviewed for direct system access eligibility once you have received REB approval. To inquire about the status of your request, please contact Research.Administration@ahs.ca. If your study does not qualify for direct access, we will be able to assist in exploring options for alternate data sources to find the data that you need for your research project.
The most commonly requested EMRs for direct access for research purposes are listed below. Please click on the links below to learn more about approval policy, requirements, and processes.