Fighting Deadly Diseases with Equitable and Accessible Data

The statistics on life-threatening diseases in the U.S. paint a grim picture: This year will bring approximately 600,000 deaths from cancer. We lose one person every 34 seconds to cardiovascular disease. More than 6 million Americans live with Alzheimer’s today—a disease that “kills more than breast cancer and prostate cancer combined.” 

Devastating to patients and their families, these are complicated conditions with varied causes and different treatments. But they share at least one factor: a lack of common data standards and compatibility across electronic health records in the U.S. 

This dramatically limits how data can be accessed and used to treat diseases. Moreover, the problem disproportionately affects underserved populations. 

The compelling need to make more and better data available in the fight against cancer is why MITRE and our partners developed mCODE™, or the minimal Common Oncology Data Elements.

mCODE’s open-source structured data elements enable analyses of data across patient records. This allows clinicians to more effectively determine the right treatment for a patient—based on the results of thousands or potentially millions of cases. 

The MITRE-led CodeX HL7^® FHIR^® Accelerator, a community-driven effort to advance mCODE, has spent several years testing and implementing the model and continues to explore new use cases. We’re now engaged in initiatives beyond oncology to expand the approach to other disease specialties. 

For instance, the Center for Intelligent Health Care at the University of Nebraska Medical Center, an effort to leverage the approach for cardiovascular health. The CodeX community also launched GenomeX, a similar initiative for genomics.

A Community Approach to Disease Treatment

Evolved from MITRE’s independent R&D program, mCODE offers a scalable, sustainable model that puts patients at the center of care. For example, common data standards make it easier for patients to access their records and determine who to share them with and when. 

The model thrives on collaboration across the healthcare community. 

Members of CodeX, for instance, work together to develop standards and create use cases to advance interoperability and enable better cancer research and care. And we’re growing the CodeX umbrella to cover new initiatives. 

“Drawing on mCODE’s initial success in oncology, we’re now assessing how we can expand the approach to other clinical specialties,” says Andre Quina, principal investigator of MITRE’s Oncology Standard Health Record research program.

“If we can demonstrate success with other specialties, then we can bring together a broader coalition across medicine to improve clinical results,” he adds. “We’re talking to leading organizations in government, industry, and academia to find the right partners for these efforts.”

For patients with Alzheimer’s—a disease that can start a decade or more before symptoms appear—the stakes seem particularly high.

That’s why MITRE experts joined colleagues from the Johns Hopkins Medical School, the Banner Alzheimer’s Institute, the University of Arizona Medical School, and others to publish a call to action in the “Journal of Prevention of Alzheimer’s Disease.”

The charge? Increased attention to the overlooked role of a single, critical element: standardized real-world data in electronic health records. 

A New Tool to Take on Dementia and Health Equity

The team proposes leveraging mCODE’s approach to launch an initiative called the Standard Health Record for Dementia. This effort would explore using the model to collect and share data contributed by dementia patients.

Grace Moon, who leads MITRE’s health transformation work, says the impact of Alzheimer’s and its related dementias reaches across racial, ethnic, and other diverse populations—resulting in immense social and emotional costs. 

“These types of dementias also disproportionately affect disadvantaged populations. Older Black adults are about twice as likely—and older Hispanic Americans about 1.5 times as likely—to have these as older white adults,” Moon explains. 

“But they’re less likely to receive a diagnosis and more likely to be diagnosed in later stages, due to reasons including lack of awareness about—and stigma around—the disease. 

“Being able to use a large set of records with standardized data can help us better understand differences in disease progress, treatment, and care, as well as how to improve outcomes for all people.” 

To discuss these issues with the community, MITRE’s mCODE team will participate in an Alzheimer’s Association-sponsored webinar on November 1.

The task of increasing the quality of health data is a momentous one. But we continue to partner across the public and private sectors to create enduring national impact in fighting these devastating diseases.