The Patients' Association of Canada, which officially launches the week of Feb.14,  has been established to provide a national voice for patients in public discussions about the country's health-care system and how it can be improved.   President Sholom Glouberman, a longtime health care consultant and philosopher-in-residence at Baycrest Centre for Geriatric Care in Toronto, outlines his experiences as a patient, how that led to the formation of the Patients' Association and what the group hopes to achieve. The following question-and-answer interview has been edited and condensed.   


Sholom Glouberman, founder of The Patients' Association of Canada, says patients' need to help to decide what services they have or how the services are delivered. ((Nathan Denette/Canadian Press))

Question: Describe your experience with the health-care system as outlined in your book "My Operation."   

Answer:  I had an operation to take out part of my colon because there was a polyp in it that couldn't be removed with a colonoscopy and the polyp was going to become malignant, though it wasn't malignant when they took it out. I ended up spending almost two weeks in the hospital, and the experience of being in a hospital was very, very different from what I had expected. I was much more passive and much less involved in my care than I thought I would be, and it was a very strange and very disorienting experience. And I thought that there were many parts of it that could be made better if patients were more involved in planning the services that are provided.   

Question: Wasn't it actually several months of being in and out of hospital before your medical issues were rectified?   

 Answer: I think that there were probably consequences of the operation that lasted for several years, but the first four months were particularly bad because I had an open wound that had to be healed. So it took quite a long time.   

Question: What were the problems you encountered in terms of lack of communication with hospital staff and continuity of care?   

Answer: The thing that was really interesting was that people would put things into the medical record and no one else would read them. When I finally got to the record, I discovered all kinds of things that hadn't been told to me.   

The other one, of course, was that the way in which the system is set up for the patient is not really to provide continuity of care for the patient. It's to make sure that all the parts of the system are arrayed correctly in order to give care — for example, how nursing is organized. I was in hospital for almost two weeks and I think that I had probably as many as 20 different nurses. I don't think people were ill-willed or anything. It's just that the patient is seen pretty much as an object and not as somebody who is a person who is there who is participating in the care.   

Question: How did this experience lead to the formation of the Patients' Association of Canada?   

Answer:  I discovered that one of the things that wasn't told to me was that I had had my appendix taken out. That sort of got me — that while they did the [colon] operation, my appendix was taken out and no one had told me. And then later I discovered that there was some regurgitation in the valves of my heart that they hadn't told me about because their main concern was the operation. But they really do have to tell you things like that because if you have regurgitation in your heart you have to take antibiotics before you go to the dentist, for example.   

 I decided this is the kind of stuff where we really have to think about how one goes about communicating with patients and how one goes about making the system more responsive, and recognizing that patients do have experiences as people in hospitals and there are lots and lots of ways quite easily to make that experience better.   

I got put on a hospital committee because of my objections and I realized because I've been in health care for a very long time that it wasn't of any use to be on a hospital committee if you stood alone. So I got a bunch of other people who were also quite knowledgeable about health care who had had strong large-hospital experiences and we used to meet before and after the meetings. We called ourselves the Group for the Realistic Improvement of the Patient Experience — GRIPE.   

And then after a while, we decided that what we really wanted was to make sure that patients became part of the health-care system in ways in which they hadn't been before. Because everybody else decides for patients. Patients don't really get to decide what services they have or how the services are delivered.

We thought that patients should begin to have that kind of role, so we formed the organization, Patients' Association of Canada, and started to meet and think about what were the elements of the patient experience that could be improved and how to do that and how patients could begin to play a role in health care.   

Question:. Is your membership Canada-wide?   

Answer:  There are two distinct groups of people. One group of people are experts in health care like me. Another group are people who have had a patient experience either with themselves or with their families, and sometimes both. The vast majority are from Ontario because our meetings are in Ontario, but we have membership in Quebec and in Alberta and in British Columbia as well.   

We have a (Canadian Health Services Research Foundation) grant …to look at issues related to the patient voice across the country. The grant is to look at governing bodies at boards of hospitals and to see how the citizen members of the boards can help the hospitals take on more of the responsibility for governing quality and patient safety.   

Question: In what way do you see health care needing to change?   

Answer:  There are three different levels of where we think patients can be more involved. The first one is at the clinical level, right at direct intervention with the doctor having patients feel more capable of asking the right questions and preparing them for dealing with the system in all kinds of ways.

We also think that patients have a lot to say about how services are planned. A good example of that is how people are met when they come into an emergency room. The people who meet them should really be trained to deal with the anxiety that most people have when they come into the emergency room, and that rarely happens. And so planning that service is something that patients can really be part of.   

The third is at the large policy level. We think that patients do have a perspective on what policies the country should follow and various provinces should follow, so we're looking to have patients also be involved in large policy-making bodies.   

Question: What are the barriers to achieving these goals?   

Answer: The biggest barrier is that the entire health-care system has come into being as a result of the ways in which acute infectious diseases were treated in the 19th century. In the 19th century, most people at that time died of acute infectious diseases like pneumonia and tuberculosis and cholera. And what happened as a result is that doctors became professionalized and scientific, and hospitals began to be built to deal with the acute episodes of those diseases.   

The vast majority of people now don't die of those diseases. Most people die of chronic diseases. When you have an acute infectious disease, you really don't have to be part of the treatment. Doctors understand the protocols, they understand the science of it, they understand how to treat the disease. But if you have a chronic condition like heart disease or if you have diabetes, the system is not very good at dealing with it. Making a system like that change is very hard. It takes quite a lot of effort and it's going to be very slow.   

Question: Do association members feel that as patients they hadn't been listened to or were not part of the solution?   

Answer: I think that the big sense that you have is that there are lots of things that could be made better quite easily if the patients' voice were heard, and it's been very hard to make that voice heard. So we're promoting that voice — that the perspectives patients have on many features in the health-care system are very different to the perspectives of the people who provide the care. And there's not very much interest very often in what people experience in health care.