Expansion of roles of trusted data stewards will help to transform the health system in Ontario and rapidly meet ongoing and persistent challenges in health and healthcare, according to a new report from ICES.
The five recommendations in the report aim to build a more people-centered approach to personal health information (PHI). This will mean expanding the way organizations like ICES, who are authorized by law to collect and analyze PHI for the monitoring, planning and evaluation of the health system, can work with PHI.
The Personal Health Information Protection Act (PHIPA) was enacted in Ontario in 2004 and governs how PHI can be collected, used, and disclosed by different types of health-related entities.
In the nearly two decades since PHIPA was implemented, Ontario’s health system has shifted and continues to shift dramatically, incorporating changes in technology, information flows, health system organizational structures and operations, and models of care.
As part of ICES’ vision of improved healthcare for everyone through world-leading research and analytics, ICES representatives met with the Ministry of Health in February 2023 to present recommendations for modernizing PHIPA. This was followed by a written submission to the Ministry of Health and also included a copy to Ontario’s privacy regulator, the Information and Privacy Commissioner of Ontario.
The recommendations include:
- Changing how PHI can be disclosed to healthcare providers to improve timely healthcare delivery or prevent risk of serious harm to a patient.
- Allowing the collection of non-health-related personal information for the purposes of analyzing social determinants of health.
- Using data to identify people who are sick and may not be receiving care or who are receiving care that may be harmful to them.
- Permitting the collection of PHI from a broader array of organizations.
- Expanding and clarifying the purposes for which PHI can be used—for example, for education and training purposes and the development of machine learning models.
ICES maintains its commitment to advocating for advancements in PHIPA that enable organizations to build on their existing strengths as trusted data stewards, and expand their abilities to conduct real-world, population-based analytics informing decision-makers in Ontario’s health system.
The report, “Modernizing Ontario’s Personal Health Information Protection Act: Recommendations for a Data-Driven Health System,” is a condensed version of the written submission to the Ministry of Health and is published on ICES’ website.
Author block: Cartagena R, Lewandoski A, Paterson M, Schull M, Smeed T, Smith M, Vermeulen M.
ICES is an independent, non-profit research institute that uses population-based health information to produce knowledge on a broad range of healthcare issues. Our unbiased evidence provides measures of health system performance, a clearer understanding of the shifting healthcare needs of Ontarians, and a stimulus for discussion of practical solutions to optimize scarce resources. ICES knowledge is highly regarded in Canada and abroad, and is widely used by government, hospitals, planners, and practitioners to make decisions about care delivery and to develop policy. In October 2018, the institute formerly known as the Institute for Clinical Evaluative Sciences formally adopted the initialism ICES as its official name. For the latest ICES news, follow us on Twitter: @ICESOntario
FOR FURTHER INFORMATION PLEASE CONTACT:
Misty Pratt
Senior Communications Associate, ICES
[email protected]
613-882-7065