Jean-Yves Duclos

“Madam Speaker, I will be splitting my time. This bill is very easy for the people of Nanaimo—Ladysmith to associate with. To be diagnosed with a chronic illness in Nanaimo—Ladysmith really is to find out how transportation works in British Columbia, because we inevitably need to receive treatment not only in Nanaimo but also in Victoria, in Vancouver or sometimes in other places on the island. We know very well what the consequences are of medical information not being available where we receive our medical care. Those consequences include misdiagnoses, non-diagnoses, wrong medication and lower quality of care as a result. The reason we need to receive health care all over the island and the mainland, and in some cases why we need to go to other places in our community, is that the Nanaimo Regional General Hospital, which is the main hospital in Nanaimo and the area, has about 345 hospital beds. However, I cannot remember a day when the number of patients in the hospital, when I have been there either visiting someone or for another reason, has been below 400. This means that we travel for health care, and we know what happens when our medical records are not available. We understand the problems that come with needing to stop, find information and have it faxed over from one place to another. In B.C., in fact, we have more than 40 different electronic medical record systems, which are used across health authorities, specialists and family practices. We understand the consequences when those systems do not talk to each other. The BC College of Family Physicians reports that more than 78% of doctors use between two and five systems. Believe it or not, that is actually by design, and it puts our lives in danger. What this bill deals with is a phenomenon known in the health care world as “data blocking”. The minister admitted and said in her speech this morning that 92% of doctors in Canada have said that a lack of access to patient medical records hampers their ability to provide care. Health Canada has reported that only 29% of primary care providers share patient information electronically outside of their practice. That is one of the reasons the Canadian Medical Association and other medical health organizations have been calling for a decade or more for electronic medical records to be available where and when health care providers need them. Dr. Margot Burnell, who is a previous Canadian Medical Association president, has described this as doctors facing “an uphill battle trying to provide timely patient care when they are routinely dealing with health systems that cannot communicate with each other”. That makes this bill a very long time coming. In fact, it is not the government’s first attempt to bring this forward. Bill C-72 died on the Order Paper in the last Parliament because the Liberals decided that it was more important for them to go to an election. We ask two questions on this side of the House. The first question is, what took the government so long? Why has it taken this long to bring in a bill that Canadians so badly need and that has been called for by patient advocates, by medical professionals and by patients? The other question is, why did it take the government 18 months to introduce this bill in the House when this bill so clearly needs to be implemented to save lives? The next question we need to ask about a bill like this when it is being brought forward by the government is, what do we need to do to make sure it will get this right? We cannot afford another software debacle or failure in this particular case. We cannot afford for Canadians’ medical records to become unavailable or get scrambled the way we have seen with so many other programs the government has tried to implement in the software space. Whether it is PrescribeIT, Cúram, or some of the other problems that we have had, we cannot afford to see that happen in this space. In that context, it is distressing to have learned from the Senate’s testimony here, and I believe my colleague recounted this earlier, that the government is considering hiring Canada Health InfoWay to administer this particular program. That is a situation where, given the management issues and health care issues with that organization, specifically those related to health care software in the past, Canadians may have some very reasonable concerns. A second issue that I really believe we need to deal with at committee is a number of definitional concerns. The idea of contextual interoperability can mean different things in different circumstances. We must ensure that the data that travels in between systems, when the software interoperability is implemented, is seamless, is not another data dump, is readable on the other end and is usable. Similarly, we need to ensure that there are clear definitions for terms such as “data blocking”, “good enforcement mechanisms”, and “real remedies for failure”. The Competition Bureau pointed out in 2022, which is another reason why we are asking why this is taking so long, that electronic medical record vendors were, in fact, blocking data deliberately. This bill is now targeting those problems, including vendor lock-in, data blocking and the unreadable data dumps I just discussed, so it is very important that the bill expand the information-blocking penalties to include hospital networks and authorities that sit outside of these systems and may further hamper interoperability. The Senate committee on this bill recognized that vendors are only one part of a wider health data system and recommended that the government consider extending responsibility as I have described. I would recommend that the House committee that examines this bill take a look at that gap, because software can only make the record available. Someone still has to complete the referral, the transfer, and get it to the clinician who is taking over care. Privacy is also something that needs a very precise answer with respect to this bill. Section 5 of the bill says that the interoperability duty does not require access, use or exchange where privacy law prohibits it, but clause 6’s data-blocking prohibition has no equivalent expressed privacy law exception. I would note here that the Office of the Privacy Commissioner supports interoperability, but recommends that the ban be subject to privacy law. Therefore, the committee should examine and close that gap where appropriate so that a vendor is not treated as blocking information for refusing an exchange the law, in fact, forbids. There is also a need to ensure that compliance costs are not so high as to prevent entry by new providers. What I would say in closing, is that Bill S-5 would not build the tower that Nanaimo needs. It would not add the staff beds or the cath lab we need north of the Malahat. I will continue to advocate for those things both here in Ottawa and with provincial decision-makers in Victoria. However, this is a good start. I hope we will see the committee do good things with this bill and that it will come back to the House in a format we can support.”