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Could patients help improve health care system navigation?

An interview with Sholom Glouberman

What are the main problems patients face when navigating the health care system?

Navigating is easy if the system is transparent. But the system is convoluted and not visible to patients. People keep talking about adding more things to the system that would help people get through it, providing support for them. But I think that the job of the planners is to start to make it more transparent, more obvious to everybody: clearly defining what the next steps are and the various stages of events. The lack of transparency is because the system is not oriented towards patients and families but towards providers. For example, laboratories are often located at the opposite end of buildings and blood taking goes close to the laboratories rather than close to where the patients see their doctors. Very often, patients have to go to three places to have three different tests. Those kinds of organisations – which are good from the point of view of service delivery – are not necessarily good from the point of view of patients. I think that at the moment, no one should go into the health care system alone. Everybody should be accompanied by a family member, because the system is not transparent.

Are these problems the same across Canada?

Yes, I think that the entire system is founded on acute care and on medical care. When you have an acute episode, it does not matter where things are because you do not deal with it, the system deals with it. But if you have a chronic disease, where it happens over a long period of time, and you have many contacts with the system, then you want to have continuity of care with the same provider. You do not want to be sent to different places all the time, you want to have continuity of the testing facilities, so you know where they are and how to get in. And because the morbidity of the population has shifted from acute to chronic, the system is not really properly set up to deal with current needs.

Part of this state of affair comes from the history of Canada’s publicly funded health care system, which started with hospital care. It was the Hospital Insurance Act that started in, then, afterwards we began to pay doctors. We have a health care system that is completely focused on hospitals and doctors. Doctors earn more money if they work in hospitals and it seems to be more interesting to work there from an intellectual and scientific point of view. But considering the needs of the population, we need a lot more primary care, continuity of care and especially care of all kinds of other practitioners who are not in hospitals, but in the community. So it is not just the lack of primary care doctors, it is the lack of community support services such as physiotherapy, occupational therapy and others that would help patients go through the acute episodes of chronic conditions.

What does your Association do to address these problems?

At the moment, we have just finished working with the Ontario Primary care Performance Measurement Group – led by the Canadian Institute for Health Information. They gave us a draft of their performance measurements and we reviewed it with a patient group and made a series of suggestions in order to make the entire questionnaire more relevant to what patients want. Bringing the patient perspective can help identify gaps and develop new ways of looking at them that might be helpful. For instance, you know that the vast majority of people who come to the emergency room are not very sick. But the job of the people who meet them at the door, the triage nurses, is to take out people who are very sick of people who are not very sick. However, the people who are not very sick have quite a lot of anxiety and worry. But the emergency rooms are not equipped to deal with such anxiety. So we suggested a performance measure that would describe the number of triage nurses and front door people who are trained to deal with the anxiety of the population that they serve.

Do you think electronic medical records can help navigating the system?

I do not think we have a choice. I think that gradually, things are going to become more electronic. The objection over the years has been privacy and confidentiality. To a certain extent, there are some areas where confidentiality is at issue, but in most areas, it is not. And most patients are not so concerned about confidentiality of the medical records. Moreover, the possibility of creating secure networks that are harder to breach is there, the technology is there. Think about the fax machine and how widely it is used to send information and medication prescriptions. The fax machine is hardly secure. Yet, Canada has the most widely used fax machines in the world for medical care. And that is not because patients object to questions of privacy. The resistance to making medical records electronic has not come from patients. It has come mostly from physicians who do not want to change the way they practice. But gradually, it is beginning to happen.

What I do know is that once you have electronic medical records, patients’ access to their records can be improved. And we are very much in favor of increasing patients’ access to their records. Right now it is very difficult to access records, even though patients have the right to do so. Electronic medical records also makes it much easier to make appointments online and to get your test results. You know that in some places, the nurses cannot give you your test results? The doctor has to do it. It would save everybody’s time and quite a lot of anxiety if test results were available to patients online. The medical culture has to become more open and has to recognise that these things are useful… and it is beginning to happen to be fair.

At the policy level, what actions does your Association take to improve how patients navigate the system?

What we are saying is that patients should be at the policy table. We visited a hospital in Ontario that had just spent six months and many thousands of dollars developing a patients’ rights document. That is a major policy at the hospital to declare what the patient’s rights and obligations are. What was fascinating about it was that it took us 30 seconds to see that they mentioned the patient’s right, and what patients could do, and where patients fit into their hospital and so on, and mentioned absolutely nothing about patients’ families. The fact that they missed that is exactly the kind of things that happens when patients are not at the table. Providers do not see the entire patient perspective. So largely, the system is structured to do things TO patients and to do things FOR patients, but it is not structured to do things WITH patients. And our job is to help them do things with patients.

Guest :Sholom Glouberman President Patients’ Association of Canada

Journalist :Myriam Hivon, Ph.D.


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