Major big data project in Alberta seeks to transform IBD care in all communities

An extraordinary big data research project at the University of Alberta, in partnership with Crohn’s and Colitis Canada, seeks to deliver specialized care and personalized therapies to Canadians living with inflammatory bowel disease (IBD).

The study, “Predict Disease Course and Therapy Response in Crohn’s Disease and Colitis” (PREDICT-CC), is using digital innovation, biomedical engineering, artificial intelligence (AI) including deep learning and convolutional neural network (CNN) architectures to uncover new ways to understand, predict and prevent IBD – and help erase the lack of accessibility to specialist care in Canada.

“To make sure we build the right technology, and take the right approach, our research program brings together physicians and data scientists with patients themselves, and experts in public health, ethics, gender studies and Indigenous health,” says Dr. Daniel C. Baumgart, PREDICT-CC principal investigator and Professor & Director, Division of Gastroenterology at the University of Alberta.

“We want to ensure equitable access to specialist care to help people manage this chronic disease regardless of where they live.”

The challenge at hand

More than 300,000 Canadians have IBD, a number expected to rise to 400,000 later this decade. This rise, spread across a vast geography, creates distinct challenges in effectively managing IBD in Canada.

People who live in rural settings have long had issues accessing medical specialists, who practise mostly inside urban centres. This means, for tens of thousands of Canadians with IBD, lengthy travels to receive vital specialist care and attend follow-up appointments – a problem worsened by winter weather is far too common.

“We must recognize then that a large number of patients are regularly followed by non-specialists in rural Canada, who need more support in providing consistently high-level care for their patients with this complex disease,” Dr. Baumgart says.

Leveraging the recent advancements in machine learning capability, PREDICT-CC collaborators will turn to the data to achieve this goal. Alberta is a fertile ground for such innovation, as the province’s robust electronic medical record (EMR) system contains data from over 4 million people – 60,000 of whom live with IBD.  

A unique path toward personalized IBD care

Inside these vast records, data scientists will identify patterns in how IBD patients are doing over the long term, and what contributes to their outcomes. In this way, Dr. Baumgart says they will find answers to persistent questions that typical clinical trials are unable to solve. 

Those answers can open the door to personalized medicine that considers how Canadians from different backgrounds, environments and genders respond to treatment. For individual patients, it will allow us to better predict which medication will be effective (and at what dose), who is more likely to experience IBD complications, and who is at greater risk for future hospitalizations.

This data approach will also refine diagnosis with imaging techniques– an aspect of care that is both vital and challenging, because the disease can be interpreted differently or missed altogether in any one CT scan or MRI. The study plans to provide specific information to radiologists who can more precisely detect the disease and its level of activity – while also pinpointing those who do not have IBD. 

“We’ll build new standardized tools so that physicians practising anywhere can make accurate, informed decisions on how to manage each patient with IBD,” says Dr. Baumgart. “In this way, patients can get more specialized IBD care from non-specialists so they can receive the most appropriate treatments, and achieve the best possible outcomes.”

In years to come, the team will develop new remote monitoring tools for patients at home to stay safe and connected to their care team, from any location. New technology will empower people to even monitor the effectiveness of their own therapy, and transmit important data back to their health-care team. 

A new era in IBD research 

“This rich ecosystem of research will fill gaps in knowledge around IBD that traditional studies cannot, and which will translate directly into patient care faster,” says Kate Lee, Vice-President, Research & Patient Programs at Crohn’s and Colitis Canada. “It also symbolizes a new era for patient-empowered and patient-oriented research.”

In PREDICT-CC, patients are active participants in ensuring the vision for the future is grounded in what they actually need most. Dr. Baumgart says that they will use patient insight to build technology that can be comfortably used at home, and decision support tools that their care teams can use to shape their care journey. 

“We will improve patients’ ability to connect with specialized care teams the way they need to when living with a chronic illness,” Dr. Baumgart says. “We want to not only treat complications but predict them and act on them before they happen. That means we need continuous information flowing in both directions between patient and provider.” 

PREDICT-CC will run within the Alberta Precision Health Innovation, Research and Technology Ecosystem [PRECISE] for which Dr. Baumgart is principal investigator. With a focus on precision health, AI, Indigenous Peoples and gender, PREDICT-CC aligns with four signature foci at the University of Alberta.

You can find more information on Dr. Baumgart’s research here.

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  • Canada has among the highest incidence rates of Crohn's and colitis in the world.
  • 1 in 140 Canadians lives with Crohn’s or colitis.
  • Families new to Canada are developing these diseases for the first time.
  • Incidence of Crohn’s in Canadian kids under 10 has doubled since 1995.
  • People are most commonly diagnosed before age 30.

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