Ottawa’s health information demands will benefit patients
March 31, 2023
The recent federal-provincial agreement on healthcare spending is being hailed as an important step toward the liberation and sharing of personal health information between healthcare providers and patients.
“We’ve now moved out of the arguing phase and into the solutioning phases,” said Will Falk, senior fellow at the C.D. Howe Institute and executive-in-residence at the Rotman School of Management. “There’s real money and intent here, and they’ve agreed they’re going to get things done.”
As part of the funding agreement, Ottawa will require the provinces to annually report their progress on several indicators, including the percentage of health professionals able to share patient health information and the percentage of Canadians able to access it.
“In the U.S., they’ve had greater transparency through a number of programs for a good decade. We know from some of the research they’ve done that patients with access to their information are more engaged with their care and they come to their appointments prepared to have important conversations,” said Dr. Trevor Jamieson, chief medical information officer at Unity Health, formerly St. Michael’s Hospital in Toronto.
Both Falk and Dr. Jamieson insist that the data be computable or machine readable, and that raises the whole issue of interoperability.
“Five years ago, if we were having this discussion, we would have been looking at a portal,” said Falk. “Pretty clearly though, we’ve moved past the portal stage to talking about open APIs.
“If I’m a patient,” said Dr. Jamieson, “I should be able to pull my information from multiple sources and do basic things with it – like draw a graph. And if you can do that for a patient, then that establishes the interoperability standards that can be used to also exchange information between clinicians, institutions and research registries.”
Rather than build a government-run, consolidated digital repository at the national level, Dr. Jamieson proposes the use of third-party tools like Apple Health that allow patients to import data from multiple sources.
“A government-run central repository of personal health information would be difficult to pull off, but if you have a good model that patients can access in a standardized way, you don’t need it,” said Dr. Jamieson.
“It offers choice at the user end, too, in terms of the tools they use and not have the functions prescribed by some central agent who has decided these are the five things you’re allowed to do because that’s how the system was built. If you have a third-party tool that does some amazing things and you want to share your data with that tool, ultimately that should be your choice.”
Rather than reinvent the wheel, both Falk and Dr. Jamieson urge Canada to adopt the same interoperability standards mandated by the U.S. 21st Century Cures Act, which was passed in 2016 and formally enacted last year.
Under this Act, all certified health information technology must support application programming interface functionality and be able to provide patients with their personal health information in a digital and computable format.
Apple and other third-party tools have leveraged that standards-based interface to pull information, so in the U.S., people have the ability to import information from a number of different sources. It’s difficult to do that in Canada because of the lack of standards.
Adopting the same standards as the U.S. and our other trading partners, including Fast Healthcare Interoperability Resources (FHIR) and the United States Core Data for Interoperability (USCDI), is important because digital health is a global industry, said Dr. Jamieson.
“When you subdivide that market into a whole bunch of little markets, it creates a real challenge for small vendors because they have to continually rebuild their product for one-offs, which really puts them at a disadvantage. It’s also a problem for the big multinational vendors who may not be interested in rebuilding their products to accommodate a different set of standards. We need to realize that a whole lot of work has already been done in the international community, so we need to accept it.”
Many of the EHRs used by hospitals and long-term care institutions in Canada already have these standards because they have to meet U.S. accreditation requirements, but that’s not the case with Canadian vendors who dominate the primary care, home care and other markets.
Adopting the same standards that are already legislated in the U.S. and our other trading partners will create a regulatory environment in which Canadian digital health companies can serve the entire Canadian market and drive business internationally.
“The current fragmented provincial approach to healthcare is a drag on innovation, creating barriers to the efficient procurement of technologies, interoperability and data sharing,” concluded a December 2021 University of Calgary School of Public Policy paper co-written by Dr. Jamieson. “Our heavily siloed system disadvantages not only the healthcare system and patients, but Canadian digital health companies who, because they are unable to scale up in Canada, will find it hard to compete in the growing global digital health industry.”
Citing the examples of Canadian Armed Forces personnel and their families who regularly relocate from one province to another and Indigenous communities adjacent to provincial borders that use health facilities in different jurisdictions, the paper points out that a common set of interoperability standards for all of Canada will also help with the portability of digital health information.
In addition to the requirements to report on progress toward the sharing of patient health information, the feds are asking the provinces to measure and report on the percentage of people attached to primary care, as well as surgery backlogs, net new health professionals and access to mental healthcare.
“These reporting commitments will likely get more specific once the bilateral agreements are negotiated, but it’s a good start,” said Falk. “A high-performing healthcare system should be reporting on these measures and others to their citizens on a transparent basis. It should be clear if they’re succeeding or not.”
The agreement, concluded Falk, is a positive step. “A whole bunch of things didn’t happen here that could have happened. We could have ended up in squabbling and useless time spent and we didn’t.”
However, there is still work to do to bring Canada’s healthcare sector into the 21st century, said Falk, citing the need to do away with the fax machine and to move more rapidly toward ePrescribing and eLabs.
“Encouraging people toward new technologies and standards is great, but it’s much stronger if we also sunset the old technologies,” he advised.