According to Sholom Glouberman, founder of Patients Canada, information technology will drive progress toward a patient-centred system. —Report from a presentation at the 2010 conference of the MUHC-ISAI

Before we can assess what impact IT might have on health care, we need to understand the complex nature of today’s healthcare system and the distinction between projects that are simple, complicated and complex. Baking a cake is a simple project: the first time you follow the recipe you might not be so sure about how it will come out, but the second time it comes out better and you feel more secure that every time you bake the cake it will come out the way you want it to. You might alter the recipe to make it better, but the idea of a recipe is that you will always get a certain result.

Complicated projects involve bringing multiple simple projects together. We can understand what elements need to be considered in an airline’s IT system: the number of seats, the different categories of passengers, the available slots on the schedule, the number of planes. An IT system can be set up to capture every element of that system and determine where the passengers sit, when they go, how much they pay, and all of that can be made transparent to the passengers. It is a complicated system, a matter of taking a whole bunch of atomic elements and following a very clear recipe to build an information system. It might take a while and cost a lot, but it will provide a dependable result that can be reproduced.

A good example of a complex project is raising a second child. As you raise the first child, you develop a recipe and feel confident when the second child comes along that you can do this again. But when you apply the recipe, you do not obtain the same results, because the second child is not the same as the first child. Rather than try to apply recipes at all, you need to follow the child and respond to his or her lead.

Health care as a complex system

Health care was once a complicated system; it is now complex. The shift came about as our thinking about disease evolved from an acute to a chronic model. Health care is no longer dealing with bacterial diseases that manifest as acute illness and can be clearly diagnosed and treated, but rather with chronic conditions, which have a very long period of onset and manifest only at certain times. Their course is very different from one person to the next, and depends on many factors controlled not by doctors, but by patients themselves.

The model developed to describe chronic disease, called the Wagner model, emphasizes self-care. But even here, no single model of self-care applies across the board. Chronic diseases and conditions have varied courses and people can themselves do many things to avert acute episodes. Different individuals will take different actions and things will work for some people but not for others. One person’s story of dealing with Crohn’s disease will be quite distinct from another person’s. There is no one recipe and healthcare professionals need to learn to follow the patient’s lead and support him or her, as with that second child.

Patients become the hub

As it is based on acute diseases, our system is not structured to support individualized self-care. The Dawson Report of the 1930s in the U.K. formed the basis for the way all healthcare systems are structured in the English-speaking world. Called a ‘hub and spoke’ model, the acute-care hospital is the hub, and the spokes run out to community agencies and independent practitioners. While we still see the system that way, the spokes have now multiplied to such an extent that we can no longer keep track of them all. People turn to many such organizations to help manage chronic diseases. In one study, we counted 3,000 health and social service agencies in southeast Toronto alone. They represent a vast array of services — everything from meals on wheels to ‘friendly visits’ — only some of which are considered part of our healthcare system. We cannot hope to bring 3,000 agencies together to discuss how to structure a system. The only vantage point from which our vast number of health and social service agencies can be seen as part of a system is the patient’s. A patient’s journey through an illness can lead from symptoms to use of parts of the standard system such as physicians and physiotherapists, use of parts of an alternative licensed system including naturopaths and acupuncturists, and then to use of related unlicensed supports that might include massage, physical training and advice from purveyors of health food or exercise equipment.

Patient leadership

What is now called information technology or IT is, strictly speaking, information and communications technology (ICT). The communication aspect is only beginning to get attention in the health ICT sector. Energies have been focused on manipulating databases and being able to access those databases in a variety of ways. However, tremendous growth and change on the communication side of ICT are occurring alongside these efforts. The ubiquitous Facebook permits social networking, or communication across to other people with the database as background to that communication.

These new communication platforms enable people with chronic diseases to talk to each other, and we can expect the growth of social networking to provoke important patient-led changes in the way healthcare organizations function. We have to rethink how the pieces of our healthcare systems interact, how we respond to chronic conditions, and how we are going to organize ourselves to meet those needs. Patients need to be involved in these deliberations, and new communication platforms provide unprecedented opportunities for them to identify problems and explore solutions together.

The people who sit at the table and decide things about health care for patients are professionals, managers, politicians and policy-makers. They all are trying to do the best for patients. Inevitably, given their different positions, what they say is good for patients will differ. However, their viewpoints also differ from what patients actually say and want. If we change that and bring patients to the table to speak for themselves, we may come up with some interesting ways to meet healthcare needs.

I had an experience with the healthcare system a few years ago that convinced me of the need for much greater patient involvement. We started the Patients’ Association of Canada (PAC) in 2007 as a group of somewhat disgruntled patients who wanted to try to bring a patient perspective to healthcare debates. Everybody in the Association has either had, or accompanied someone through, a significant healthcare experience. We do not want to fight the system; we want to work together with other people to make the system better for those of us experiencing it. Over the last 25 years, doctors’ and nurses’ experience with healthcare has deteriorated as well. The work is less satisfying, more rushed, and in some ways unpleasant. We believe that improving patients’ experience will also improve the experience of everyone working in health care.

The PAC has been growing and has begun to take on various projects. Last June, we found our way into the Canadian Institute of Health Research summit on ‘Patient-Oriented Primary Care,’ a conference which, until we joined, had no patient participants. It was our first chance to speak publicly about the need to have a strong patient voice in health care. On Dec 1, 2010, we will, along with the Ontario Medical Association, award the first Patients’ Choice Awards in Peterborough to doctors who are especially patient-sensitive. Our next project is to build education programs so that patients can have a stronger voice at the governance level in health care. In most hospitals, patient representatives are considered a ‘pain in the ass.’ We would like to train patients so they can contribute positively to changes at the governance level.

Patients know things that can lead to simple changes with significant impact. One example comes from a PAC member who is also a nurse. Her adult daughter suffered a compound fracture — a bone was sticking out. She drove her to the front door of the hospital while she went to park the car, instructing her to tell the triage nurse she had a compound fracture so she would be taken into the back for immediate treatment. The daughter spoke to the triage nurse, repeating her mother’s instructions, but all the triage nurse could say was “I’m sorry, I can’t see you now; you’ll have to wait in line as there are other people ahead of you.”

When her mother came in, she saw her daughter sitting there in terrible pain and talked to the triage nurse again. The nurse repeated that she would have to wait her turn, as patients cannot see her without first seeing the receptionist out front. So she went to the receptionist, and then the triage nurse saw her daughter and moved her into the back where she was well treated.

We discussed that experience at the Association, then with the hospital in question. We discovered that emergency room nurses assume the triage job in rotation. No one is taught to represent, or be the face of, the hospital. We felt this was an area where modest changes could bring a significant improvement in the patient experience.

When you go to a large Chinese restaurant for dim sum, there is a woman dressed in a black suit whose job is to manage the customers and prioritize seating. No matter where you go, there is a wonderfully diplomatic ‘triage nurse’ for dim sum and they are practically interchangeable. It would not be a big change in policy for the hospital board to change the triage nurse’s function, give that person a bit more money, some training in customer relations, and look for candidates with the right energy. Many similar problems could also benefit from patient insight.

Supporting patient self-management

In looking ahead at how our health system might evolve with the expansion of information and communication technologies, we must recognize health care as a socio-technical system. Neither the social nor the technical side can make sense on its own. We need to examine the interaction between the two to make decisions that can push the system closer to what patients need today.

In Ontario, the health technology assessment agency, led by Dr. Les Levine, conducts studies and makes recommendations about what technologies are covered by public health care and how they should be used. They conducted a study on a new portable blood-testing device for people taking the blood thinner warfarin. Patients on warfarin have to come in to the hospital monthly to have their blood tested. This machine would enable them to do this at home. The technology assessment unit tested the machine over a number of years and found that clinical outcomes (deaths, complication rates, etc.) for patients using the home testing machine were identical to outcomes of patients who went to the hospital for testing. They therefore concluded that the machine had no added value and should not be covered by public insurance.

A number of patients spoke up and said that home testing was life-changing. Dr. Levine listened and the agency changed the recommendation. The agency also decided to include patient representatives on the technology assessment group, because patient input at this level is so critical. The home testing machine saves patients huge amounts of time. There are similar machines available for urine testing and acute heart episodes, and many more are under development. And these are being connected to databases so the results can be transmitted to a patient’s healthcare providers and be analyzed for trends.

Patients can make decisions that are sensible for our system. And patients know they need less, not more, care. The notion that everybody is demanding more care is a huge mistake. However, it often takes a patient’s viewpoint to recognize changes that could have a positive impact.

Dr. Glouberman has written My Operation: A Health Insider Becomes a Patient, based on a personal experience with the healthcare system. In it, he combines a diary he kept during his hospital stay with his medical record to reveal the tremendous difference in perspective between the patient and the hospital. He also explains how this led to the founding of the Patients Canada.