T1D Exchange is focused on using real-world research to change and improve the healthcare provided to people with type 1 diabetes (T1D) across the country. Those improvements can then change both the day-to-day experience, immediate health, and long-term health of people living with this disease.

But life-changing research doesn’t have to happen in a lab or controlled clinical trial setting.

Through the T1D Exchange Registry, people with T1D can provide valuable information from home by filling out surveys and questionnaires, participating in focus groups, and even sharing continuous glucose monitoring (CGM) data with us. In fact, more than 1,000 members of the T1D Exchange Registry already do.

The data we collect through the Registry gives both us and our research partners deeper insight into the experience of the T1D population: the successes, struggles, what works, and what needs to be improved.

In fact, the data we’ve already collected has led to true changes in T1D healthcare!

Gathering Big Data in T1D for Real-World Research

Collecting and analyzing big data in healthcare has become an increasingly valued method of better understanding many different health conditions — including T1D. When we talk about “big data in healthcare,” here’s what we mean:

  • Gathering large volumes and many varieties of data pertaining to how healthcare is managed, delivered, and paid for in a real-world setting
  • Organizing that data in a way that allows us to understand experiences and outcomes at a population level
  • Securely storing and managing this data to protect patient privacy and confidentiality
  • Analyzing these large, complex datasets to drive improvements in patient outcomes

These large collections of data are anonymized and compiled by hospitals/clinics/labs, electronic medical record (EMR) vendors, pharmacies, and health insurers — both private-sector companies such as UnitedHealth Group and public entities such as the Centers for Medicare & Medicaid Services (CMS). They can contain information collected over several years from many millions of patients, which offers a wealth of insights on both personal and population levels.

So, what questions can big data analysis help us answer about T1D? Here are a few that particularly interest the T1D Exchange team:

  • What are the most influential factors that determine the risk of a person with T1D developing short- and long-term complications?
  • How can easy-to-access tools (like HbA1c or CGM data) be used to predict these short- and long-term complications?
  • What are the habits of endocrinologists vs. primary care physicians when it comes to prescribing treatments to people with T1D?
  • What are the benefits vs. costs of diabetes management tools (like CGMs, pumps, etc.)?

While other, more traditional ways of doing research —like site-based clinical trials investigating the effects of a new device or drug — will always be crucially important, a big data-based approach to enable real-world research has clear advantages.

Some of the key benefits of big data-based research include:

  • It can offer more representative measures of a population, or sub-population, of people with T1D
  • It can provide insights on a broad, healthcare system level
  • It can offer detailed data about the benefits of a treatment method used in everyday life
  • It can be significantly cheaper and produce valuable results in much less time

Big data-based research on its own, however, also has its limitations, such as having sparse (if any) self-reported data and data generated by personal medical devices (CGMs, pumps, pens, etc.), which play a significant role in living with T1D.

A Powerful Approach: Linking and Anonymizing CGM Data + Personal Health Records

In recent years, trusted techniques have emerged that enable the linking of a patient’s device-generated data to their real-world personal health records — giving researchers a more complete and accurate picture of a person’s health.

These specialized techniques link a patient’s data from different sources (for example, CGM and EMR data) and at the same time remove the patient’s name and other identifying information. The now anonymous data can then be securely shared and used in T1D research to look more deeply at important issues in T1D, such as the benefits vs. shortcomings of diabetes technology (CGMs, pumps, pens, patches), insulin therapies, medications, and the role of healthcare systems.

This full-picture approach to collecting, linking, and analyzing data can lead to significant improvements in outcomes for the entire T1D population.

At T1D Exchange, we believe in the immense value of data in its many forms and have confidence in the potential of privacy-compliant data-linking technologies to bring about groundbreaking insights and improvements in T1D care.

Stay tuned in the coming weeks for an exciting announcement from T1D Exchange about the launch of a new data-linking study opportunity with the T1D Exchange Registry.

Not already a participant in the T1D Exchange Registry? Join us!