A research project at the University of Alberta, in partnership with Crohn’s and Colitis Canada, is putting the power of big data to work in an effort to deliver specialized care and personalized therapies to Canadians living with inflammatory bowel disease (IBD).
For the study, “Predict Disease Course and Therapy Response in Crohn’s Disease and Colitis” (PREDICT-CC), researchers are using an innovative approach that combines biomedical engineering and artificial intelligence techniques to uncover new ways to understand, predict and prevent IBD – and help improve access 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,” said Daniel C. Baumgart, PREDICT-CC principal investigator, and professor and director of the Division of Gastroenterology at the U of A.
“We want to ensure equitable access to specialist care to help people manage this chronic disease regardless of where they live.”
The challenge: ensuring access for all
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. For tens of thousands of Canadians with IBD, that means travelling long distances to receive vital specialist care and attend followup appointments – a problem worsened by winter weather.
“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,” Baumgart noted.
Leveraging recent advances in machine learning, PREDICT-CC collaborators will turn to the data to achieve this goal. Alberta is fertile ground for such innovation, because the province’s electronic medical record system contains data from more than four million people – 60,000 of whom live with IBD.
A path toward personalized care
Inside this wealth of records, data scientists will identify patterns in how IBD patients are doing over the long term and what contributes to their outcomes — patterns Baumgart said will help 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 doctors 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 big-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 researchers plan 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,” said 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 even empower people to 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,” said Kate Lee, vice-president of research and 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. Baumgart said the research team will use insights from patients to build technology that can be comfortably used at home, as well as decision support tools 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,” Baumgart said.
“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), which Baumgart leads as principal investigator. With a focus on precision health, AI, Indigenous peoples and gender, PREDICT-CC aligns with four signature areas at the U of A.
This story originally appeared on the Crohn’s and Colitis Canada website.
