Bill S-5: I’ve been waiting 20 years for this, and it’s not good enough

In November 2014, I wrote an article with the headline, “The Interoperability Imperative.” In it, I quoted a colleague who said something I’ve never forgotten: “Interoperability and data mobility have a huge impact on whether innovation is even possible. Wherever valuable data is accessible through simple open standards, innovation will flourish.”

That was over 11 years ago. The problem was already old then.

When Bill S-5, the Connected Care for Canadians Act, was tabled in the Senate this past February, I felt something I hadn’t felt in a long time: hope. Real hope. We’d never had actual legislation before. Just roadmaps. And fax machines.

That hope comes from two very different places, and I want to be honest about both.

The first is professional. About half my career has been in healthcare. I’ve worked for health IT vendors. I’ve worked in the public sector deploying their technology. I know how this industry behaves from both sides of the table.

The second is personal. I have MDS, a blood cancer. I’ve been through two stem cell transplants at The Ottawa Hospital. I’ve dealt with Graft vs. Host Disease. I was hospitalized for COVID.

When the GVHD later flared, I was confined to my room because of the recent COVID infection. I’m also a cardiac patient. The five-year survival odds after what I’ve been through are, to put it plainly, not great. The health system and I are going to be in a long relationship. I have more riding on it working properly than most people writing about it.

I believe deeply in technology’s power to transform healthcare. Not by replacing human compassion. Rather, by giving healthcare providers more time to be compassionate.

The nurse who patted my leg gently during a painful stretch and told me I’d be OK is irreplaceable. Technology can give her more time for exactly that.

That’s what Bill S-5 is trying to do. I applaud the intent … I am genuinely, deeply disappointed by the execution.

The opt-out that swallows the law: Buried in Section 7 of Bill S-5 is a clause I recognized immediately. Not from legal training, but from 20 years of watching health IT policy fail in slow motion.

The Act only applies in provinces and territories that don’t already have “substantially similar” requirements in place. If a jurisdiction passes its own interoperability legislation, however thin or vague, the federal law steps aside.

I’ve heard this argument my entire career. Health is a provincial jurisdiction. Ottawa must tread carefully. I understand the constitutional reality. What I also understand, from experience, is how this attempt to trigger a constitutional debate plays out in practice.

Some jurisdictions will move seriously. Others will pass legislation designed primarily to meet the “substantially similar” test while changing as little as possible. A national standard that applies in some jurisdictions and not others is not a national standard. It is a patchwork with extra steps.

Vendors don’t build for optional. They never have.

Back in 2018, I wrote an article imploring healthcare leaders to embrace APIs, a powerful architectural approach to interoperability. I called them a “strategic weapon.”

I made the case that what had worked in retail, finance, and virtually every other data-intensive industry could work in healthcare too, if leaders demanded it. When I pitched the idea to one hospital leadership team, the CEO’s response stopped me cold. “So, what exactly is an API?” It wasn’t a question. It was a dismissal.

That exchange taught me something I’ve never forgotten. In health IT, change doesn’t come from enthusiasm. It comes from consequences. And consequences are exactly what vendors have learned to avoid.

Health IT vendors are businesses with shareholders, sales pipelines, and legal teams whose primary job is to minimize compliance cost and maximize contract lock-in. When a standard is mandatory and uniform, they build to it. When it is optional, fragmented, or subject to jurisdictional variation, they do something else entirely.

They wait.

They wait to see which jurisdictions opt out. They wait to see how “substantially similar” gets interpreted. They wait to see whether enforcement actually has teeth.

I’ve watched this behaviour through multiple generations of interoperability initiatives in Canada. The roadmaps came. The frameworks came. The voluntary commitments came. And in boardrooms across the country, the conversation always went the same way. Interoperability was always on the roadmap. Coming in the next release. The next contract cycle. The next provincial agreement. There was always a reason why now wasn’t quite right.

Without hard consequences, uniformly applied, delay is simply the rational business decision.

The Motor Vehicle Safety Act didn’t ask nicely: There’s a law in Canada that regulates another complex, safety-critical product that crosses provincial borders. You’ve probably never thought about it, because it works so well you never need to.

The Motor Vehicle Safety Act mandates specific technical standards for every vehicle manufactured or imported for the Canadian market. It doesn’t ask manufacturers to meet federal safety requirements unless their jurisdiction has opted out. It doesn’t leave the definition of “crashworthy” to future regulation. It doesn’t suggest that airbags would be a nice idea if the industry finds it convenient.

It mandates. It penalizes. It applies uniformly.

I assert that the health information a nurse needs to safely care for a leukemia patient is at least as important as the crash rating of the car that drives that patient to the hospital.

Standards deferred are standards denied: The specific technical standards vendors must meet are left entirely to future regulation. The bill passes first. The standards follow later.

Later? As an engineer, I was taught that time has precise units. Days. Weeks. Months. “Later” was never on the list.

I’ve watched what “later” means in Canadian health IT. It means consultation. In theory, consultation sounds reasonable. In practice, public sector procurement rules – including Ontario’s Broader Public Sector Procurement Directive – are routinely used to justify keeping vendors at arm’s length during exactly the kind of collaborative standard-setting that would produce workable results.

Vendors aren’t equal participants in the conversation. They’re handed requirements they had no hand in shaping. Standards get softened, timelines get extended, compliance dates get pushed. By the time binding standards are published, the political energy has moved on.

The fax machines are still running.

I still want this to work: I’m writing this from a position of hard-won recovery. In remission now, I’m grateful to my oncology team at The Ottawa Hospital and my cardiac team at the University of Ottawa Heart Institute. I’m grateful to the nurses at both institutions who made me feel genuinely cared for during the worst of it.

And I’m grateful to a healthcare system that, for all its informational fragmentation, contains extraordinary people doing extraordinary work.

I believe technology can make that work better. I’ve believed it for 20 years. I’ve written about it, argued for it in boardrooms, and staked a professional career on it.

Technology only makes healthcare better when the information flows where it needs to go. Information only flows where it needs to go when the rules are clear, uniform and enforceable. Rules are only clear, uniform and enforceable when they apply to every jurisdiction, on day one, without exception. Not later. Now.

Ottawa finally tried. After 20 years of writing about this problem and the last two of living it from a hospital bed, I’m genuinely grateful for that much.

Now I’m asking them to try harder. For patients like me, time is not a policy abstraction. “Later” is not good enough.

I wanted to celebrate this bill. I still do. Give me something to celebrate.

Michael “Mike” Martineau is a Canadian technology entrepreneur and Internet pioneer who co-founded early internet infrastructure companies in the 1990s and was recognized by the Canadian government for his contributions to Canada’s internet. After a career as a digital health executive overseeing large-scale EMR deployments across Canadian hospital systems, Mike brings a uniquely personal perspective to the subject. A leukemia patient who underwent two stem cell transplants at The Ottawa Hospital, and a cardiac patient at the University of Ottawa Heart Institute, Mike has more than a professional stake in getting this right. His earlier health IT commentary can be found at ehealthmusings.ca, his personal account of living with leukemia at thecancercard.ca, and his latest work at digitalpatient.ca.