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.

All the information collected in the NDR is de-identified, which means there is nothing in the database that could potentially identify the patient. They do not collect names, health card numbers  or dates of birth, so a researcher would only have access to information that could be helpful to better understanding the health issue. For example, they could see that a woman with type 1 diabetes was diagnosed with kidney disease at age 54, then scan the database to find out how frequently women in their 50s with type 1 diabetes are diagnosed with renal complications. They can also see the type of medication these women are on and whether there are any other contributing factions. This type of data can be extremely helpful to establishing new clinical practice guidelines or for advocating for increased healthcare spending if a trend is identified.

Projects using the NDR are approved by a governing committee that includes an equal mix of patients and researchers. Doug Mumford was co-chair of the Research Governance Committee until late 2019, and protecting patient data while supporting research advances was a key part of his role. Having lived with type 1 diabetes for more than 50 years, the retired engineer looked at the issues presented by collecting patient data for a repository with an analytical mind. The benefits of this type of research are vast – the findings can help determine trends in diabetes that will enhance how the healthcare system operates, information that can improve outcomes and decrease costs. Yet, he also understands that patients are extremely nervous about their personal information being made available.

“We really want to make the data available to researchers, we see that as half our job,” he says. “At the same time, we have to make sure it can’t be re-identified. And when we permit or do not permit a researcher to use the data, that’s probably the number one thing.”

For Mumford, this balance is important. He knows the research being done with this data will help impact clinical practice guidelines, it will guide governments in improving the healthcare system and help expedite the development of treatments, like the artificial pancreas, that are important to him and others living with diabetes.

In order to ensure information remains protected, the committee and staff have developed a framework and a secure system with numerous safeguards. The Patient Partners are involved in every decision and are able to ask questions and provide input from the patient perspective to ensure they fully understand every aspect and can speak accurately on behalf of patients across Canada.  Even though the data contains no identifying information, the decision has been to err on the side of extreme caution with how it is used.

“We need to take a more informed look than any individual patient can reasonably have. We have six patients out of our 12 members, so patients are well-represented on the committee, and we six patients are being constantly re-educated,” says Mumford. “I think it’s important that we have this group of patients representing all patients, as this group receives the training to do it in a much more thorough way than an individual patient in his doctor’s office would.”

Conrad Pow, a senior project manager for Diabetes Action Canada who oversees the NDR, believes the decision to have patients play an active role in this research program has paid enormous dividends. “You get a resource of lived experience,” he says. “You actually have someone who is a caregiver of a parent or a child with diabetes, or you have someone living with diabetes in the community who will tell you up front that this is what we’re struggling with right now.” The lived experience, he believes can bring an important layer to the process that book learning alone cannot.

For researchers interested in using the database, both Mumford and Pow encourage them to get in touch. Both are hopeful that once someone see the quality of the data available and the potential to use it to solve research questions, the possibilities are endless

Learn more about the National Diabetes Repository


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