Patients need to be part of health-care team, conference told

MONTREAL – Shalom Glouberman was a hospital insider, so he thought he would be well-prepared 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 health-care 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 individual patients’ 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,” he said. “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 systematically 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.

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