Every quality improvement initiative, research breakthrough, and clinical innovation starts with high-quality data. Yet, data alone won’t improve outcomes. Transforming information into real-world impact requires thoughtful governance, shared expertise, and close collaboration across clinics, researchers, and data specialists.
Supporting this work is the newly merged T1D Exchange Data Governance and Data Science Committee (DGDSC), which brings together experts from across the T1D Exchange Quality Improvement Collaborative (T1DX-QI).
The merged committee reflects the increasingly interconnected nature of its work, drawing on clinical, technical, and operational perspectives to strengthen the data infrastructure that powers research, quality improvement, and innovation.
Together, members focus on how data is structured, collected, and used to improve care for people living with type 1 diabetes (T1D).
"By bringing together expertise in both data science and data governance, we're able to think about the entire lifecycle of data — from how it's collected and standardized to how it's used to drive research and improve patient care," said Emma Ospelt, Senior Data Analyst at T1D Exchange.
Behind each data point is a person’s experience living with type 1 diabetes, explained Ospelt.
"Every data point is really a touchpoint with a real person and their care team,” she said. “It's interesting to see how something that looks like just another metric is actually an entire clinical workflow.”
As the committees’ work evolved, so did the need for a more integrated approach. Over time, the Data Governance and Data Science Committees found themselves tackling many of the same challenges — from developing data standards to supporting research priorities and clinical implementation. Bringing the groups together under a single umbrella created new opportunities for collaboration while streamlining decision making.
"We are hopeful that with the overlap between the two committees, bringing together both perspectives will bring more fruitful discussions,” said Ospelt. “The data governance team might identify a new research opportunity, and the data science team can help determine what data we need to collect to make that possible.”
Grenye O'Malley, MD
Icahn School of Medicine at Mount Sinai
Siham Accacha, MD, CDCES
Cohen Children's Medical Center, Northwell Health
While much of its work happens behind the scenes, the committee plays a vital role in advancing the goals of the T1DX-QI. Improving the quality, consistency, and accessibility of data helps lay the foundation for T1D research, quality improvement, and better care.
"As the Data Science Committee, we play an important role in shaping the strategic direction of the T1D Quality Improvement Collaborative's data and analytics efforts," said Dr. Nirali Shah, former co-chair of the Data Science Committee. "Through a consensus-driven process, we evaluate emerging scientific opportunities, identify gaps in existing resources, and prioritize initiatives that have the greatest potential to advance type 1 diabetes research."
Achieving that vision starts with reliable, standardized data. The committee brings together subject-matter experts who develop best practices for optimizing EMR data across participating centers, standardizing key metrics, and creating practical resources — such as data mapping guidelines — to support high-quality data collection.
“Having a solid base of clinical data is critical for accurate research and quality initiatives,” said Dr. McDonough, former co-chair of the Data Science Committee. “Standardization of terms and conditions makes that possible, and would not occur if it weren’t for the dedicated work of the DSC. The way we understand and manage diabetes is rapidly changing, and this committee makes it possible to keep us all 'speaking the same language.'"
That work extends far beyond data management, underpinning nearly every initiative across the T1DX-QI.
Once data is standardized, the committee establishes best practices for sharing it responsibly across centers to support research and quality improvement.
“Governance around data is essential to the work of the T1D Exchange,” said Dr. McDonough. “Even across centers using the same EMR vendor, the way each is built and structured is different. Normalizing that data allows us to truly compare ‘apples to apples’ in a consistent way across 60+ centers. The importance of this work cannot be emphasized enough. This standardization and governance is what allows us to have greater power from our collective data.”
With consistent, standardized data in place, researchers and clinicians can accurately compare outcomes across centers, uncover variations in care, and identify opportunities to improve outcomes.
By ensuring the T1DX-QI has high-quality, reliable data, the committee not only supports research but also expands the range of answerable questions and helps focus quality improvement efforts where they can have the greatest impact.
These insights also help guide the committee’s priorities by “dictating future research priorities by highlighting areas where additional study and innovation are needed to improve patient outcomes," Shah said. "Our decisions guide investments in data infrastructure, standards, and analytical capabilities while fostering projects that promote data sharing, reproducibility, and cross-disciplinary collaboration."
No single institution has all the answers to the complex challenges of T1D care. By bringing together experts across the T1DX-QI, the committee creates a space where diverse perspectives lead to practical, scalable solutions.
Members represent a wide range of expertise, including:
"Collaboration is fundamental to the Data Science Committee's ability to drive meaningful progress," Shah said. "By bringing together investigators, clinicians, data scientists, and representatives from participating institutions, we are able to combine diverse expertise and perspectives to address complex challenges in type 1 diabetes research."
This multidisciplinary collaboration helps the committee establish best practices, prioritize new initiatives, and translate data into meaningful improvements in research and clinical care. It also ensures decisions reflect the needs of researchers, clinicians, and the broader T1D community.
As the DGDSC comes together, their shared commitment to collaboration, innovation, and continuous improvement will continue to shape their work — strengthening the data foundation that supports better research, more informed clinical decisions, and improved outcomes for people living with type 1 diabetes.
"By ensuring that priorities are informed by both scientific evidence and the needs of the broader T1D community, we help create a foundation for impactful research and continuous improvements in clinical care for individuals living with type 1 diabetes," said Shah.
For Emma Ospelt, achieving that vision depends on having trustworthy data.
"Our goal is to ensure reliable, high-quality data so that every decision — whether for research or quality improvement — is built on information we can trust," she said.