Hon. Tracy Muggli: Honourable senators, as many of you know, I spent most of my career working in health services, which means I have had the fortune to work with dozens of databases, none of which have ever communicated with one another. I want to bring some of that experience to my speech today.

I have to say that I was excited to see Bill S-5 introduced. Thank you, Senator Kingston, for your sponsorship. I think fragmented health data is hurting Canadians and stealing precious time away from our front-line health care providers. Even as we’ve tried to put patients first, Canadians still do not have a single, interconnected patient information system they and their providers can rely on.

To me, patient-first care means making sure patients feel understood and cared for when they enter the health system. It’s hard to make a patient feel understood when you’re asking them to repeat themselves in every health care setting in which they present, including clinics, hospitals, hospices and even their own homes with home care services.

We’ve known how to fix this for a long time. Information systems should communicate. Patients should be able to access their own health information, and that information should follow them through the health system so the professionals responsible for their care have the full picture.

Ask a primary care provider, nurse, social worker, occupational therapist or any community health team member, and they will tell you about the problems that arise when hospital care, home care and primary care information is siloed.

Let me give you some insight into a few common issues.

A home care worker might arrive at the home of a patient for their daily personal care only to find they were admitted to the hospital over the weekend and, perhaps, passed away. They’re greeted by a grieving family or sometimes by no one at all. The system that recorded the death did not communicate that information to the database used by the home care provider.

In other cases, families receive calls asking about appointments for loved ones who are no longer alive. These are inefficiencies, but more importantly, they are painful for families and demoralizing for the providers.

Another common time sink happens in the community care space. For example, a community mental health worker may be responsible for supporting someone living with serious mental illness. These folks disproportionally live at the intersection of our health and legal systems. It’s not unusual for a patient to be under a community treatment order under the Ontario Mental Health Act, requiring regular treatment such as a monthly injection. If, for example, the community worker is unable to find them and administer their treatment, they may assume the worst. They may spend hours calling around, contacting police or outreach teams, trying to locate the person who they believe has disappeared. Only later do they discover the person was admitted to hospital or is currently in the emergency department.

I think the most glaring problem that I have experienced is the lack of data transfer from hospital care to community care. Transitional points of care always heighten the risk that patients and clients will not receive the correct follow-up care or the correct approach to care when admitted to hospital, including medication, especially where medication management regimens are complex. Things get missed. I have seen important monthly injections missed for those living with schizophrenia far too often.

This is taxing emotionally and needlessly time-consuming, and it is time that could be allocated more broadly, especially given the patient/client caseload sizes. It prevents our already overburdened front-line workers from providing care that patients need.

I will also delve into a personal example. Just last week, I had a day surgery procedure. I was required to go to my general practitioner, or GP, for a pre-op assessment. I was required to bring a form to my GP from my specialist to be completed. Upon completion, I was given a stack of papers and told to be sure to go for my blood work and that I must bring these papers to my surgery.

Because a few weeks went by, I almost forgot to bring the papers with me as I was ready to leave the house at 5:30 a.m. and realized I booked an Uber for p.m., not a.m. I got to the hospital where I registered. I was asked many repetitive questions that were clearly on my stack of forms and then given another stack to take up to the surgery holding area.

I was taken to a bed and changed into a gown, which was followed by a nursing pre-op assessment where I was asked most of the same questions again.

At this point, the nurse took all the papers. When it was time, I proceeded to the surgical wait area. The anaesthetist asked me a number of questions — some repetitive again — and then I waited about 30 minutes beyond my scheduled surgery time. A nurse came back to report to me they were trying to find my file — the big stack of papers. Turns out it was in the slot next to the intended slot.

So, all was well, and I had my procedure, but you can see how much time was wasted and how an interoperable health record would save significant time and provide the possibility of providing more care to more people. As a certified Lean Leader, this obvious waste nearly puts me into a cardiac situation.

The bottom line is this: If databases across our health system were able to communicate with one another, information could easily follow the patient. Community providers would know when their patient has been admitted to hospital. Home care teams would know when a patient has died. Primary care providers could know when new issues have been uncovered in hospital before the patient walked into their office. Interoperable systems would allow providers to receive notifications when a patient’s situation changes and to prepare in advance, rather than trying to piece together information after the fact.

The technology to do this already exists and has for years. What has held us back are fragmented systems, regulatory barriers and technology models where different platforms simply cannot speak to one another. In the meantime, IT professionals — bless their souls — have spent an extraordinary amount of time trying to custom-write reports that download information from one system and have a common patient identifier downloaded from another system in an effort to piece together information that is often provided too late to providers.

Bill S-5 seeks to address that problem by establishing common international standards that allow digital health systems to exchange information securely. As the Government of Canada noted when introducing this legislation, only about 29% of providers currently share patient information electronically outside of their own practice, leaving patients far too often carrying paper records between offices or hospitals in a system that should already be digital. Or they are left using unsecured fax systems. I can’t tell you how many times I received doctors’ orders for patients that were not intended for me in my fax machine.

In fact, researchers study health information exchange. There is a lot of background on this. Those studies have found that when systems cannot share records effectively, duplicate diagnostic tests occur in roughly one third of transferred patients, with many of those tests medically unnecessary. That duplication reflects both wasted time for clinicians and additional burdens for patients.

Organizations across the health sector have also emphasized the importance of this change. As Dr. Margot Burnell, President of the Canadian Medical Association, has said, when personal health information can travel securely between clinics, hospitals and labs, patients experience better outcomes, and doctors have more time to focus on care.

At St. Paul’s Hospital, where I led large provider systems struggling with this issue every day, and at hospitals across this country, that second point is important. Front-line health care professionals spend far too much time navigating disconnected databases. They spend hours a week tracking down information, repeating assessments and duplicating work. Many providers are faced with running and entering data into dual databases with the same information to ensure reporting requirements for provincial and national reporting systems are recorded. This was the case in some of the substance-use programs I was responsible for, as primary health providers required the information in their database, and mental health and addiction services required it in theirs.

Electronic connected care is also crucial in the delivery of care to newcomers to Canada who may have challenges with language and communication or when interpretation is not made available in a timely matter. Piecing together a patient’s care needs is crucial in such cases. Similarly, having access to connected data in cases where patients are vulnerable due to age, gender, sexual orientation, ability, race or any other vulnerability can also help to ensure that good care is provided.

Research published in the Annals of Internal Medicine has found that physicians now spend nearly half of their workday interacting with electronic records and administrative tasks. This is exacerbated when information is located across multiple systems. Multiple log-ins, multiple passwords — you have heard it all before.

When information flows more effectively, providers spend less time chasing records and more time caring for people. One study examining the use of health information exchange in emergency departments found that when clinicians could access complete patient information through shared systems, they saved, on average, more than two hours of clinical and administrative time per case while improving quality-of-care decisions.

Reducing that administrative burden also matters for the health workforce. As Health Canada has noted, many physicians report that administrative workload contributes directly to stress and burnout. In my former roles, I have heard this repeatedly from all health care providers. When we remove unnecessary barriers and duplication, we create space for health professionals to do the work they entered the profession to do.

Better data sharing also allows for more compassionate care. Anyone who has worked in health care knows how often patients are asked to repeat their story. They may explain their condition to a family doctor, then again at the hospital, then again when they see a specialist and again when they return to community care. Patients sometimes say, quite reasonably, “Why can’t you just look at my other record? That says it all.”

Studies show that when health systems share information effectively across providers, patients report higher satisfaction with their care and greater confidence that their clinicians understand their medical history.

I like this legislation for a lot of reasons, but one of the most important points is that it allows patients to move through the system without constantly retelling their story. That can be hard on people. It also recognizes that care increasingly takes place across many settings: hospitals, community clinics, home care, mental health services, hospice care and sometimes private providers who deliver services alongside the public system. For care to be truly coordinated, those parts of the system must be able to communicate with one another.

Canada has already taken important steps in this direction. Canada Health Infoway was an important early effort to support digital health infrastructure across the country. This builds on that work and helps move us further toward a connected system where information can move safely and effectively to support patient care.

I want to acknowledge a submission from the Canadian Life and Health Insurance Association. They are concerned that the definition of “health information technology vendor” in this bill may be broad enough to capture insurers. This could create significant unintended consequences and upend how their industry currently operates, which is largely adjacent to the health system. As this legislation moves to the other place, I encourage colleagues to take a closer look at this issue, which came to our attention late in the study in a written submission, and for the government to determine whether this might need to be addressed through an amendment or regulation.

I believe we can build systems that both protect privacy and improve care. In fact, doing nothing carries its own risks. When information does not move appropriately within a patient’s circle of care, providers are forced to make decisions without the right information. This bill recognizes that health data is part of how Canadians receive safe, coordinated and compassionate care.

I am standing here today because I think Bill S-5 will help patients gain greater control over their health. It will make it easier to access the information that folks in health care need to do their jobs. All of us and all our families, friends and loved ones will be better off with a health system that is more responsive, more efficient and more focused on the people we’re helping. I look forward to advancing this bill through third reading so that we can move it to the House of Commons.

Thank you, meegwetch, marsee.