Individuals managing their diabetes understand that “data is everything.” Every day, they use data about their meals, medications, insulin doses and blood glucose (sugar) levels to help them make decisions to maintain their health.
Diabetes Action Canada is unleashing the power of data on a massive scale with digital health research projects that use large databases and sophisticated analysis tools. These initiatives will allow clinicians, patients and researchers to access evidence to help transform how individuals live with and manage diabetes – to ultimately enhance health outcomes and help save lives.
Diabetes Action Canada is a pan-Canadian research Strategy for Patient-Oriented Research (SPOR) Network in chronic disease out of the University of Toronto, funded by the Canadian Institutes for Health Research and sponsors such as Diabetes Canada and JDRF. It brings together patients, caregivers and researchers to identify the health concerns of people living with diabetes to co-create research projects that address these concerns.
Two of the organization’s ground-breaking digital health projects are the National Diabetes Repository (NDR) and Connect1d. In both cases, patient representatives were equal partners in project development from the earliest stages.
National Diabetes Repository (NDR)
The National Diabetes Repository (NDR) is designed to enable research that will provide the evidence necessary for health-system change to improve the outcomes of Canadians living with diabetes and its related complications.
The NDR was built over several years and holds data from the electronic medical records (EMRs) of patients with diabetes in five provinces – Alberta, Manitoba, Ontario, Quebec and Newfoundland, representing more than 123,000 patients. Discussions continue with other provinces on the path to achieving full national reach.
The NDR has been set up to allow us to ‘liberate’ diabetes-related health data in a controlled environment, with patient oversight.— Conrad Pow, Senior project manager with Diabetes Action Canada
“The NDR will permit an unprecedented depth of research,” explains Conrad Pow, a senior project manager with Diabetes Action Canada. “Research using health data to identify persons with diabetes at high risk for adverse health outcomes has long been limited by laws (which vary by province) and other protocols designed to keep individuals' health information private and secure,” he says.
“The NDR has been set up to allow us to ‘liberate’ diabetes-related health data in a controlled environment, with patient oversight,” says Mr. Pow. “Researchers can study the information and develop effective interventions to prevent complications, while preserving privacy.”
The project team, which included patient partners, built multiple layers of security to protect the identity of patients, a system that Mr. Pow describes as “the Fort Knox of data.”
Other collaborators include mathematicians and computer science specialists, who have developed ways to use machine learning and artificial intelligence to power the analysis of large amounts of data to assess risk factors for diabetes-related complications.
“One specific project will develop a risk-model calculator that will allow us to identify high-risk individuals and to advise on appropriate interventions to reduce their risk,” he says.
Mr. Pow describes the hypothetical scenario where data analysis shows that a significant number of people with certain characteristics who didn’t have regular eye screening developed retinal nerve damage.
“If we see that a specific patient fits the profile, their identity isn’t revealed, but we can get in touch with the family physician, alert them that the person is at great risk of developing eye complications, and advise the doctor to schedule screening,” he says.
Connect1d is a digital registry that connects Canadians with type 1 diabetes with clinical studies to accelerate patient-oriented research and inform future policies and clinical care. In addition to giving patients a greater role in setting research priorities, the project aims to enhance the matching of patients with the most appropriate clinical trials.
“Our immediate goal is to develop a data map of all the people who live with type 1 diabetes in Canada,” says Dr. Shivani Goyal, a digital health scientist at the University Health Network with Diabetes Action Canada. “We’re going to collect this data directly from the individuals to better understand any gaps they may be experiencing in their diabetes management,” she says.
“Today, many of our policy decisions or research priorities are based on data that is either out of date or adapted from global statistics. Connect1d creates an unprecedented opportunity to connect with and learn from persons with type 1 diabetes about their quality of care and state of wellness.”
Connect1d creates an unprecedented opportunity to connect with and learn from persons with type 1 diabetes about their quality of care and state of wellness.— Dr. Shivani Goyal, Digital health scientist at the University Health Network with Diabetes Action Canada
This registry also answers the concerns of many people with type 1 diabetes about research that isn’t always “patient-oriented” and about difficulties that can occur with gaining access to clinical trials.
“Although research is well-intentioned, we often don’t include patients as true partners from beginning to end,” says Dr. Goyal. "Our mission is to have the voices of people with type 1 diabetes directly shape research priorities to ensure that we are tackling the issues that matter the most to them.
“Our hope is that elevating the patient’s role in research design will also allow us to better match patients to studies that are closer to where they live and best suited for their needs,” she says. “In this way, we hope to accelerate clinical trial recruitment and revolutionize the whole research engine.”
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