In September, a team of researchers led by Dr. Alison Paprica from the Institute for Health Policy, Management and Evaluation at the Dalla Lana School of Public Health in Toronto, and Diabetes Action Canada’s Conrad Pow and Dr Michelle Greiver, published a new paper in the International Journal of Population Data Science. The publication, Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations, included information gleaned from studying Diabetes Action Canada’s National Diabetes Repository, along with 22 other data-focused initiatives. The researchers worked together to identify a list of 15 plain-language requirements that they believe all organizations who work with data about people should address. The 15 requirements have since been incorporated into a Canadian national standard CAN/CGSI 100-7: Operating model for responsible data stewardship.
 
Overall, the team found that the 23 organizations involved in the project had a lot in common when it comes to responsible data stewardship, something Paprica felt was very positive news. “We know that we can use data to increase our understanding of chronic conditions like diabetes, and to use what we learn to improve self-management and treatment, and potentially even prevention. Other studies have shown that members of the public want health data to be used for research, but they also have concerns about privacy and data being used for purposes they don’t agree with. Our paper presents concrete examples of responsible data stewardship practices and guidance on how data-holding organization can communicate their trustworthiness without providing an overwhelming amount of technical detail.”
 
For many, the use of data to help find solutions for health concerns is an exciting prospect. Knowing that data is being handled and shared appropriately can help ease minds as policymakers consider how available this information should be. “There is a tremendous opportunity to improve health and health care with data,” says Paprica, noting that unlike breakthrough health discoveries based on clinical trials, studies that only use data can yield large-scale improvements without exposing people to experimental treatments
 
“If we can show we are responsible stewards of that data, I think we will have public support to use it for more purposes. The knowledge that can be learned from data that are routinely collected is there for us to find. It’s just really important that we’re responsible data stewards, and that we earn people’s trust in terms of how we govern, manage, and use the data. Addressing the essential requirements that our research team identified is a way to demonstrate trustworthiness,” she says.
 
Moving forward, the team would like to expand the project to examine the processes of more organizations, including for-profit companies. Over the next few months, Paprica and her team will be reaching out to companies in the private sector who have data repositories. They are hopeful that, through these conversations, they can identify practices that will increase transparency and trust when companies use the data they collect. It’s more than just communicating what is legally required; it’s about having data-holding organizations proactively publish information in a format that helps people understand what’s happening with their data.
 
Learn more about the Diabetes Action Canada National Diabetes Repository!