When Jane Holmlund recalls the day she was diagnosed with multiple sclerosis (MS) 41 years ago, what she remembers most is the lack of knowledge and understanding about the disease that her doctor shared with her. “He told me to go home and get used to living with MS, and that was basically the end of it.”

Is it different today?

“In a word, yes,” says Dr. Lawrence Richer, vice-dean research (clinical) in the University of Alberta’s Faculty of Medicine and Dentistry, and centre director of the Northern Alberta Clinical Trials and Research Centre. “In the last five years or so, there have been a flurry of new disease-modifying therapies that suggest things will be different for MS in the foreseeable future.”

MS is also the focus of a project led by the University Hospital Foundation (UHF) based on several strategic, research-driven partnerships with multinational pharmaceutical companies.

“Because Alberta has one of the highest rates of MS in the world, the province has the clinical and administrative infrastructure that supports and facilitates a unique interdisciplinary care model with the resources to amplify translational research capacity,” says Caroline Thompson, director of philanthropy with UHF. “Researchers and clinicians have access to province-wide health meta-data and a world-leading artificial intelligence community.”

Currently, UHF has attracted investments from Biogen, Hoffman LaRoche Ltd. (Roche), Novartis Pharmaceutical Canada Inc and Prairies Canada for data projects, and from Roche and Biogen for biomarker studies.

“Such partnerships extend beyond MS,” says Lisa Munro, chief development officer with UHF. “We are in a unique position in that we can bring stakeholders to the table that potentially have competing interests. But our only agenda is finding innovative solutions to complex health challenges. What we’re finding is that a lot of these organizations want the same thing — a health data platform. A way to measure which therapies are working. What is the difference between care in major centres and care in smaller communities?”

“That is just the start of the information that data can provide,” says Richer. “The gold standard in terms of diagnosis and monitoring disease progress are expensive tools like MRI. It’s quite a reasonable question to say, ‘Are there other ways we could monitor disease progression that don’t require expensive tests that you only get once every two or three years?’

“That’s where the health data platform can work with digital companies, startup companies that have ideas about this. We could start to marry the data with their technology, for example, and introduce studies where we could invite persons with complex conditions like MS to try these devices and see if we can’t get a better handle for what’s happening at home.