Becoming partners in their care
User’s perspective is important, conference told
Shalom Glouberman was a hospital insider, so he thought he would be wellprepared for his own surgery. Then, everything went wrong. Doctors removed a non-cancerous polyp from his intestines, but he later developed an infection and almost died. As a result of his bad experience, Glouberman wanted to change things.
Patients and families for whom health care is destined are often left out of the equation, although that has started to change, said Glouberman, a noted healthcare policy analyst and philosopher-in-residence at Toronto’s Baycrest Centre for Geriatric Care.
Glouberman was one of many speakers at a Université de Montréal conference this week on the role of the patient (or “user” or “client”) of health services. “How many of you have electronic access to your health records?” he asked the crowd of health professionals gathered in downtown Montreal on Thursday. Not one person raised a hand.
The health-care system was structured in the 1950s for dealing with acute illnesses and trauma situations in hospitals, Glouberman noted.
But, while most people are not sick all the time, many are living with long-term chronic conditions, he said. They don’t need active hospital care, but support in dealing with the disease at home.
Once the “doctor knew best,” but that model of care no longer works because treatment of chronic diseases requires an individual patient’s commitment in their own care, he said in an interview.
“Patients must take a real role in designing the services and in becoming partners in their care. Here’s just one example: people react completely differently to the same medications. We want that experience to count and we want it used to help others have a better health-care experience,” said Glouberman, who initially formed a patients’ group called GRIPE (Group for the Realistic Improvement of the Patient Experience), which has since evolved into a national organization called Patients’ Association of Canada.
Few organizations in Canada systematically engage patients in various levels of decision-making, conference participants said, however that, too, is changing. Many hospitals, for example, have patient representatives on various care, safety and administrative committees. And university medical schools regularly call on patients’ expertise to help inform students.
The patient as an active member of the care team? There will come a time when people will look back and say, “How did we not include the patient?” said Vincent Dumez, who is the director of the “patient-partner” program at UdM’s faculty of medicine, where patients have been involved in educating a new generation of doctors since 2010.
To date, 3,000 UdM health students have been through the program, said Dumez, who was born with hemophilia, a hereditary blood disease that requires frequent blood transfusion. Like many hemophiliacs in Canada, Dumez acquired hepatitis C and the HIV/AIDS virus because of the tainted blood scandal of the 1980s.
In the early days when AIDS infections baffled scientists, these patients played a huge role in promoting the shared “patient experience” as a key component of good health care, Dumez said.
The most important thing for those with chronic diseases, Dumez said, is to learn to live autonomously despite the sickness. An estimated 50 per cent of North Americans suffer from at least one if not two chronic illnesses, but according to World Health Organization statistics, about 50 per cent of them do not take their prescriptions and 80 per cent turn to the web for health information that is, at times, biased or false, Dumez said.
Doctors say that their patients show up with symptoms — as well as their own diagnosis, often gleaned from Dr. Google on the Internet. A better solution is to foster good communication, create a collaboration between the patient and professional and transfer the necessary knowledge to the patient and his family, Dumez said.
That’s part of the role of UdM’s patient-partners, who are trained to teach doctors — not scientific material but how to better interact with their future patients in the mutual transfer of knowledge.
“It’s a totally different way of doing things,” Dumez said.
Indeed, education programs once made use of patients as passive subjects in simulated medical examinations.
But now UdM’s patients are seen as experts, said Raymond Lalande, UdM vice-rector of education, who ran the residency program in family medicine and is one of the people who spearheaded cultural change in the training of the next generation of health professionals.
Patients are, themselves, trained to educate new doctors on the patient experience and they are also involved in providing feedback on their bedside manner as well as in evaluating their performance, Lalande explained.
“The health professional must be aware of what the patient thinks and how he understands his illness,” Lalande said, and it only takes a few focused questions. “Studies show it only takes five minutes and can even be done in the emergency room.
“We cannot provide effective treatments unless we see how the patient sees things.”
It was once common for doctors to threaten to stop treating recalcitrant patients, for example, those with addiction issues who failed to stop smoking or use drugs on doctors’ orders.
“We now know that shows ignorance of how patients change their habits,” he said. “We must know a patient’s motivation and propose things that are realistic.”
The need for patient-partner programs became evident for Lalande five years ago after discovering a lump on his leg. He became a cancer patient. Hospital professionals didn’t know him as the vice-dean of the faculty of medicine, he said, and so he turned into “Mr. Joe Public, a nobody.”
“It allowed me to see to what point the patient’s role in training health professionals is primordial,” he said. “We can no longer educate medical personnel without taking into consideration the patient perspective. It’s incredibly strange that we didn’t think of this sooner.”