How to finally get moving on health care data reform

The state of Canada’s health care system has been the subject of dozens of reports and studies in recent years. There is no doubt now that a refresh is urgently needed. One of the critical areas that’s been identified is our badly outdated health data systems, which stand in the way of improved patient care.

So how does Canada break the impasse and actually deliver on overdue reforms? Fixing health care and data systems will require an unprecedented level of cooperation, public trust and a pan-Canadian framework on privacy and data sharing, according to experts at a recent PPF member event.

The event, titled ‘Can digital technology save Canadian health care?’, was moderated by Terri Lohnes, the founder of Tekama Advisory, a consulting practice focused on advancing health sector innovation and success. It included panelists David O’Toole, president and CEO of the Canadian Institute for Health Information, Dr. Sabrina Wong, a faculty member at the University of British Columbia Centre for Health Services and Policy Research, and David MacNaughton, president of Palantir Canada, a data integration and analytics software company, and a former Canadian ambassador to the U.S.

The panelists agreed that the cooperation that was evident during the pandemic between all levels of governments and industry needs to continue if efforts to reform the health data system are to succeed.

Whereas Canadians were once somewhat smug about their health care system, there’s now a greater focus on obvious shortcomings and how the system could be improved. Increasingly, there is pressure on decision makers to focus on outcomes rather than process.

One challenge is the reluctance among jurisdictions to be a first mover. Technological improvements that are badly needed tend to invoke horror stories about cost overruns and bad outcomes.

Without agreement among all jurisdictions, patient care remains fragmented, members heard. A patient’s data can’t be easily shared between doctors, specialists, researchers, hospitals or provinces. The system is so outdated that information is still being transmitted by fax and on paper.

This also puts enormous administrative burden on doctors, especially family doctors, further impacting patient care.

Freeing health data to improve care also raises worries about privacy. To move ahead, the public needs to be satisfied that there is a set of rules that are going to not only protect privacy and confidentiality, but unleash the benefit of data and digital to improve outcomes.

As one speaker asked: “How do you satisfy individuals that they can have trust in what you’re doing, but at the same time, using data in the public interest? That’s a conversation we’re probably overdue on across the country, and it’s possible to have it now.”

Setting up a pan-Canadian framework on health data privacy will be a key step to moving forward, members heard. And trust-building efforts should be led by health professionals, who are, after all, the people Canadians most trust for health information.

Continued reporting on modernization efforts will also be essential. People need to see progress and be able to compare how provinces are doing and how money is being spent.

As one speaker noted, “If you try to solve the entire problem all at once, you’re going to end up getting frustrated and not show progress.” But a few small breakthroughs will offer an opportunity to build on success.

How to drive health data reform: Four key takeaways

1. Establish a pan-Canadian legislative framework that supports responsible and ethical sharing and use of data;
2. Let trusted physicians and nurses lead the conversation around privacy and health data;
3. Maintain pandemic collaboration between governments and industry to speed decision-making and results; and
4. Report on modernization efforts to ensure accountability and to highlight and build on success.

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