Focusing on a health care culture where patients come first

The Alberta health-care system includes extraordinary talent and forward-thinking initiatives. But it is also faced with challenges to patient safety, frequent patient dissatisfaction, and a culture that can struggle with always putting the patient first.
That is the picture of the health-care system that emerged during a nearly five-hour forum attended by almost 400 people, streamed live and hosted by the O’Brien Institute for Public Health at the Cumming School of Medicine. The forum marked the launch of the IMAGINE Project, a grassroots, citizen-led initiative that aims to refocus the health-care system on the patient.

Question 1: “What do you think are the essential characteristics of a healthcare system that truly puts the patient first?”

“It seems to me that the system has forgotten that its only reason for being is the patient — without patients there would be no need for a system,” said Charlie Fischer, a longtime Calgary oilpatch executive who currently leads a Canada-U.S. working group on clean energy. He also co-chairs the IMAGINE Project and has recently embarked on his own two-year rollercoaster ride through the health-care system, an experience he says made it clear to him that what’s holding the system back is culture.

And it’s not about spending more money or building more hospitals, but about health care evolving to better serve its customer, just as every other industry has had to do.

Forum attendees heard of initiatives in place, or being developed, that are trying to put the patient first. But if the patients are never consulted, Fischer asked, are these initiatives really patient-centred? “If you want change, you can’t do it in strokes and pilot projects. If you want systemic change, you have to go all out,” said Fischer.

That kind of change requires buy-in from all stakeholders but particularly from the system leaders, said guest speaker James Conway, an adjunct professor from Harvard, renowned for leading one of the most dramatic culture changes in U.S. health care.

Conway was hired by the Dana-Farber Cancer Institute, of the Harvard Medical School, in the mid-1990s after the death of senior health journalist Betsy Lehman was caused by an overdose of a chemotherapy drug.

Conway recalls coming face-to-face with a traditional, insular culture that was resistant to change. But when it was discovered that Lehman’s death was due to a failure in the care provided to her rather than her underlying disease or an idiosyncratic reaction to the chemotherapy the board of governors took hold of the situation and demanded the finding be made public.

The leaders at Dana Farber realized that to systematically improve the quality and safety of care delivered, that patients and their families had to be an integral part of the design and the delivery of healthcare at the institution. Despite pushback from staff, the board placed patients and families in every major decision-making department of the institute — including hiring.

“These things were not put to a vote,” said Conway, adding the leadership was determined to do everything possible to try and insure that a similar case would never happen again. “Why? Because in the gap between excellent and perfect, there is pain, suffering and death.” Healthcare systems owe it to the patients who suffer harm to use what was learned from the tragedy to make systems of healthcare better; and they owe it to their future patients, said Conway.

The culture that needed to take hold to bring about change, he said, was one of equal respect for patients, family and staff, openness and one that has communication as a cornerstone.

The forum, which packed two theatres in the Foothills Campus Health Sciences complex, featured a combination of world-class health-care speakers and advocates, digital stories told from the patients’ perspective, a panel discussion, and social media engagement.

Dr. William Ghali, O’Brien Institute scientific director, said some of the ideas and anecdotes shared were for him, as a physician, “both challenging, and in some cases, stinging.”

Rather than pointing fingers and accusing, however, the forum was a platform from which to explore a path forward and find a way to get all stakeholders motivated to work together and build something better, said Ghali.

Some in the audience broke into tears as Dave Price, one of the founders of the Sunterra group of companies, spoke about the chain of medical errors that claimed the life of his son. A subsequent investigation by the Health Quality Council of Alberta pointed to multiple breakdowns in the continuity of the son’s health care over time. “There are many good people and pockets of great care. The problem is the culture at the broad system level,” Price said.

Building a patient-centred health-care system is about leadership, education, culture and empathy, said keynote speaker Dr. Brian Goldman, ER doctor, author, and host of CBC’s White Coat Black Art.

“Empathy is the ability to put yourself in the place of the person with whom you’re sympathizing. You’re actually standing with the person in the pit, saying, ‘I know how tough it is going to be to get out here because I’ve been there,’” Goldman said.

“Many of us in the medical profession believe that empathy is a personal trait. But it’s not, we’re all born with the capacity for empathy … it’s training that knocks that out of us.”

Organizers said the forum was only the launch of the IMAGINE Project and not an end in itself. Some experts at the forum commented that for the effort to succeed, it must become a social movement, as well as an answer-gathering, fact-finding initiative.