Clinician-Scientist leaders participate in Canadian expert panel on health data sharing

Canada’s health systems generate and collect a wealth of data but efforts to effectively share that data across organizations, regions and provincial/territorial borders have been largely unsuccessful. In response to these challenges, the federal government announced its intention to develop a Pan-Canadian Health Data Strategy to strengthen and modernize Canada’s capabilities and infrastructure in this area.

Within this context, the Public Health Agency of Canada asked the Council of Canadian Academies (CCA) to assemble an expert panel to look at the socioeconomic impacts of health data sharing in Canada. The panel was chaired by Dr. Chaim Bell, Professor in the Division of General Internal Medicine at the University of Toronto (U of T), and also included Dr. Moira Kapral and Dr. Amol Verma, two other Professors in the division.

The panel’s report, Connecting the Dots, discusses how it’s possible to protect the privacy of patients while achieving robust data sharing systems and that a continued lack of improved health data sharing could deepen existing negative impact.

“Health systems are approaching crisis levels with respect to accessibility, quality and equity,” said Dr. Bell. “Health data and its exchange presents an opportunity to improve patient outcomes, population health and health workforce sustainability by enabling a health system that continually improves and generates new knowledge.”

Health data sharing has been shown to reduce unnecessary testing, time spent re-entering information and preventable hospital admissions. With health systems across Canada facing severe capacity problems, these efficiencies could improve patient care, enhance the cost-effectiveness of care delivery, expand the scope of health research, and stimulate productivity and innovation.

However, public apprehension can arise when private health data is retained, as this sensitive information can become susceptible to a data breach. Other concerns around data sharing include increased stigmatization and bias, unintended secondary uses of data and additional burdens for healthcare professionals. Such potential risks must be mitigated by careful implementation and building trust through public engagement.

“There needs to be a fundamental change in mindset from an approach of custodianship to one of stewardship, and that's to overcome what we would call the culture of caution that exists around personal health information,” says Dr. Bell. “While such a shift may require legal reform, there are opportunities to make changes within the confines of existing regulations.”

The report also advocates for the adoption of a learning health system (in which routinely collected health data is shared to create iterative cycles of knowledge generation and care improvement), building upon the experiences of current, smaller-scale health data sharing networks in Canada and similar initiatives abroad, implementing new data-exchange and interoperability standards via a collective, coordinated and incremental method and the creation of an independent organization with the mandate to facilitate data sharing among various sectors, organizations and stakeholders.

“The risks of not enhancing health data sharing likely outweigh the risks of enhancing it, so the goal is not solely for the sake of improving government planning but to get care to the right people in the right place at the right time,” says Dr. Bell.