How the Patient voice is Transforming Database Research
By Krista Lamb
How do we know the number of people living with diabetes in a province? Is that number going up or down? Are people living with type 2 diabetes more or less likely to have a heart attack after they turn 50? Does a person with type 1 diabetes using an insulin pump have fewer diabetes related complications compared to those without an insulin pump?
These are all questions researchers are able to answer when they have access to data about people living with diabetes. It’s one of the core reasons Diabetes Action Canada has developed the National Diabetes Repository (NDR). The NDR is a tool researchers can use to better analyze information about people living with diabetes across Canada in order to support improved health outcomes and prevent complications. Oversight of the use of the data is through dedicated Patient Partners working alongside researchers, healthcare providers and experts in privacy and law. It is still uncommon for a research organization to incorporate patients into the governance of a project like this and, as highlighted in a recent article in the April 2019 edition of the British Medical Journal, this collaborative approach has been extremely successful.