Cutting-edge internationally recognized research into best practices for patients with inflammatory bowel disease (IBD) is underway at several large, university-based hospitals in Canada. While patients who can access these health-care centres are benefiting from their expertise, the challenge is to spread knowledge about the latest treatment approaches to physicians and patients located far from the big health-care centres.
Crohn’s and Colitis Canada is taking a major step to tackle this challenge by creating Canada’s first national network of leading patient-care and research centres specializing in Crohn’s disease and ulcerative colitis, the two main forms of IBD.
The “Promoting Access and Care through Centres of Excellence” (PACE) network links five top IBD centres in three provinces to enhance sharing of their findings with each other and with the broader medical and patient communities across Canada.
The driving force behind the PACE network are Canadians living with IBD, says Mina Mawani, president and CEO of Crohn’s and Colitis Canada.
“Patients are telling us that they have a lot of issues around accessing specialized care and the best treatments,” says Mawani. “Crohn’s and colitis are chronic diseases, and getting early access to specialized care is very important for early diagnosis and for ultimately getting the disease to a stable state.
“PACE allows us respond to patient needs by working to close gaps in care, improve quality of life and ultimately long-term outcomes for patients.”
Crohn’s and Colitis Canada, along with AbbVie Corporation, Janssen Pharmaceuticals and Takeda Canada, are investing an initial $2.5-million in PACE over four years. The funds will support the centres of excellence – Mount Sinai Hospital in Toronto, University of Calgary, University of Alberta in Edmonton, McMaster University in Hamilton and McGill University in Montreal – in their focus areas of research.
“All these centres are doing essential work to improve IBD patient care,” says Mawani. “We believe it’s an excellent use of resources to bring together centres of excellence that can share best practices in different aspects of treatment and care so that we can benefit patients today.”
As researchers work to raise the standard of care for all Canadians living with IBD, they will particularly focus on two areas with great potential impact – reducing chronic steroid use and ensuring patients receive specialized care as soon as possible.
“Research shows that for Crohn’s disease especially, if you’re under the care of a gastroenterologist within the first year of diagnosis, your risk of [having to undergo] surgery within two years decreases by as much as a third,” says Geoffrey Nguyen, a clinician scientist at Mount Sinai’s IBD Centre of Excellence and overall lead of the PACE network.
Dr. Nguyen also heads the telemedicine research project that aims to extend specialized care to underserved and remote communities.
“We’ll begin by using the Ontario Telemedicine Network to bring the expertise of Mount Sinai gastroenterologists into areas in northern Ontario, such as Sudbury and Thunder Bay, where numbers of these specialists are low,” he says.
Extending specialist care and disseminating standardized clinical care models will also help reduce chronic steroid use, adds Dr. Nguyen. “We have found that in certain sites, as many as three-quarters of patients are using steroids much longer than we want. Steroids have their place, but can have strong side-effects.
“Our goal is to guide physicians to make proper use of powerful new medications with fewer side-effects that can help keep patients in disease remission – so they are less likely to require steroids down the road.”
For more related to this story visit globeandmail.com