The Office of the Information and Privacy Commissioner (OIPC) of Alberta is releasing three reports that summarize engagement work the Commissioner has done with Albertans on the Health Information Act (HIA). The surveys, sent out in the latter part of 2024, asked for the views of the public, researchers, and custodians, including members of regulated professional colleges, about their interactions with HIA.
HIA governs the collection, use, disclosure and management of health information. It protects the privacy of individuals’ health information while ensuring that this information is available for care, research, and management of the healthcare system.
The Government of Alberta informed the OIPC last fall that as part of its restructuring of the health care system, it was planning to amend HIA to address any changes needed due to the restructuring and it would also consider modernizing the legislation at that time. The OIPC was invited to provide comments and recommendations on amendments to HIA.
“To inform any comments and recommendations we might provide to government, we initiated an engagement process with HIA stakeholders,” said Information and Privacy Commissioner Diane McLeod. “Our surveys gave special attention to current and future access to health information by custodians and researchers, changes in processing of health information as a result of the use of innovative technologies, and the privacy protections and rights required for Albertans to ensure ongoing trust in how their health information is handled in Alberta’s health care system. Of particular interest was the idea of expanding access to health information of Albertans and stakeholders’ views on using that information for innovative technologies such as artificial intelligence.”
Some of the common themes expressed by members of the general public in the engagement process include:
- concern about breaches of health information;
- agreement that good access by health care providers to health information is needed as well as apprehension about access to sensitive health information;
- the view that increased access to health information must be balanced by controls, restrictions and oversight;
- opposition to the use of health information to train artificial intelligence (AI) for use in the Alberta health care system, and concern about the impact of AI in general on health care outcomes;
- desire for notification if AI is used to make decisions about health care and for the ability to appeal such decisions;
- desire to play a role in reviewing and controlling access by health care providers to health information that is accessible electronically; and
- support for granting the Information and Privacy Commissioner additional powers to strengthen privacy protection, including issuing administrative monetary penalties.
There were also a number of common themes found in the feedback received from researchers and custodians, which are summarized in the reports.
Among all groups surveyed there is a consensus and understanding regarding:
- the importance of patient privacy and the need to access the right health information at the right time, by the right people;
- the need for health information to be readily available when and where care is provided, but well protected, with access to it limited otherwise;
- recognition that new technology is opening up opportunities for improvements but also apprehension regarding such technology without safeguards provided by regulation and oversight; and
- The view that major changes to HIA are not necessary.
The three summary reports will be shared with the Government of Alberta’s Department of Health and with those who provided their input during the OIPC engagement work. The reports can be found on the OIPC website here.
