Nova Scotia creates new game-changing pathways for medical research

For decades, participation in medical research in Nova Scotia often depended on timing, geography, or chance.

A patient might never hear about a clinical trial because their physician wasn’t connected to research. A willing participant might never be asked because they didn’t know opportunities existed. A rare biological sample could be lost to time simply because there was no clear pathway to use it.

Now, Nova Scotia is trying to change that.

A new consent framework allows Nova Scotians to decide how they want to participate in medical research — whether that means being contacted about studies, allowing biological samples collected during care to be used for approved research, or supporting broader health innovation efforts.

Dr. Ashley Hilchie, Senior Director of Research at Nova Scotia Health, says the idea gained momentum during preparations for the BIO International Convention in 2025, sparking conversations between Nova Scotia Health, the Province of Nova Scotia, and research leaders about whether the province could rethink how research participation works.

“That we could do something like this for the province of Nova Scotia started some exciting conversations,” says Hilchie. “The consent form, the types of consent, and most critically, how information would be protected came through robust conversations with clinician scientists, ethics, privacy, legal, and many others.”

For Hilchie, one of the biggest issues with the old approach was inequity.

“If you were being seen by a physician who wasn't engaged in clinical research, you wouldn't hear about any opportunities,” she says. “That created an inequity between citizens, which didn't sit well with any of us.”

The new framework is part of a larger transformation underway across Nova Scotia’s health system — one increasingly focused on making research a more connected part of care delivery, improving equitable access to opportunities, and reducing barriers to participation.

Hilchie says that system-wide transformation, combined with the province’s growing digital health infrastructure, is a large part of why the framework became possible now.

“We’re moving toward a system where research is not separate from care,” she says. “It should be easier for people to understand opportunities, express their preferences, and participate if they choose to.”

Part of that shift is being enabled through digital tools already becoming part of everyday healthcare interactions. MSI online renewals, YourHealthNS, and NovaStudies Connect are helping create new ways for Nova Scotians to engage with research opportunities.

NovaStudies Connect, launched in 2023, provides a public-facing registry of clinical trials happening at Nova Scotia Health. But Hilchie says access still needs to go beyond people independently searching for opportunities.

“That pathway requires citizens to be actively engaged, digest information, and then take those steps themselves,” she says. “If you are facing a life-altering diagnosis, the last thing that you should have to concern yourself with is figuring out how to access opportunities.”

While research consent itself isn’t new, Nova Scotia’s province-wide approach creates a more coordinated way to connect people who want to participate with opportunities to do so.

Most of the consent options support research happening directly within Nova Scotia Health’s clinical and research environment, while another allows information to support approved work involving external organizations such as universities, hospitals, and industry partners.

Doris Grant, Managing Director of the Health Innovation Hub, says the framework represents a significant shift in how research participation is enabled in Nova Scotia.

“This represents a meaningful step forward in how we enable participation in research,” she says. “It reflects a broader recognition that advancing care is a shared responsibility—and that every Nova Scotian can play a role.”

Grant says stronger participation can ultimately help researchers better understand Nova Scotia’s population and improve access to the right clinical trials and treatments.

“Participation in research isn’t limited to those currently receiving care,” she adds. “Understanding the health of our broader population is essential to advancing prevention, treatment, and outcomes.”

Grant also emphasized that any use of information is subject to strict privacy protections, governance processes, and legal safeguards.

For both Grant and Hilchie, the framework represents something larger than a new consent process. It reflects a broader shift toward treating research not as something separate from care, but as part of how a modern health system learns, improves, and delivers better outcomes for patients.

“Advancing medical research depends on broad participation—across patients, providers, and the public,” says Grant.

Hilchie puts it even more simply.

“Research is the ultimate team sport.”

Nova Scotians can make or update their research participation choices while renewing their health card, through the MSI online portal, or by contacting MSI directly.