Canadians do not have equal access to the best care for inflammatory bowel diseases; the chronic use of steroids among such patients is too high and although referral for specialized care should take two weeks, it has a 100 day wait time.

Now a national network has been launched to find solutions to those issues, sponsored by Crohn’s and Colitis Canada. As part of the network, McMaster University will develop an electronic health platform for patients with inflammatory bowel disease to monitor their health between clinic visits.

The network, called Promoting Access and Care through Centres of Excellence (PACE), is the largest Canadian collaboration of patient care and research centres for adults living with Crohn’s disease and ulcerative colitis, the two main forms of inflammatory bowel disease (IBD). There are 250,000 Canadians living with these lifelong diseases.

McMaster will lead a project to innovate the way patients stay connected with their physicians through electronic platform that enables remote monitoring and better communications between patients and physicians. McMaster’s Farncombe Family Digestive Health Research Institute will oversee the research with patients of the Irritable Bowel Disease Clinic of Hamilton Health Sciences (HHS).

“Changing symptoms and disease flares often cause patients to self-adjust treatments,” said Dr. Neeraj Narula. “Improved monitoring and two-way communications will keep patients engaged and doctors informed, leading to better adherence to treatments, informed discussions and improved monitoring.”

Narula, an assistant professor of medicine at McMaster and HHS staff gastroenterologist, is co-lead for the project with Dr. John Marshall, a McMaster professor of medicine and HHS gastroenterologist.

In announcing the project, Janet Lambert, a member of the board of directors for Crohn’s and Colitis Canada, said: “PACE unites world-class Canadian centres of excellence to share knowledge and elevate the standard of care for Canadians living with Crohn’s disease and ulcerative colitis. This is a bold step forward.”

Recognizing the current gaps in care, Crohn’s and Colitis Canada is investing in five centres to support patient care. Besides McMaster, the other centres are looking to standardize clinical practices and treatments across Canada using best clinical practices and evidenced-based medicine; to develop an IBD telemedicine network, particularly to remote areas, and to measure the resulting improvements in patient outcomes.

PACE will facilitate a combination of independent research and collaborative learning over a four-year period. During the first year, each centre of excellence will drive its own research. The centres will then work collaboratively in order to develop their own competencies in all areas.

Lenore Lennox, a patient with Crohn’s disease, told the audience she feels lucky to live in Hamilton.

“I can’t imagine living in a rural community with Crohn’s disease. Living in Hamilton I know I will always receive exceptional and prompt care. That’s one reason I’m excited about PACE. All Canadians, regardless of where they live, deserve equal access to excellent care.”

Crohn’s and Colitis Canada, along with its partners AbbVie Corporation, Janssen Pharmaceuticals and Takeda Canada, are investing an initial $2.5 million over four years.