HI Professionals Key to New Federal Initiative Targeting Better Cancer Data Exchange

Health information (HI) professionals will be critical to implement a new initiative aimed at improving the standardization and sharing of cancer-related health data.     

In March, the Biden-Harris Administration kicked off adoption of United States Core Data for Interoperability Plus Cancer (USCDI+ Cancer), a recommended minimum set of key cancer-related data elements to be included in patient electronic health records (EHRs).  

The USCDI+ Cancer initiative will enable healthcare providers to exchange health information about cancer seamlessly, advance equity in treatment, and improve care and outcomes for cancer patients nationwide, according to a White House announcement. Standardizing of data across EHRs also drives greater possibilities for quicker research results and more effective health interventions, say federal officials.  

“Health information professionals are a critical piece of this,” says Liz Turi, care coordination and collaboration branch chief in the Office of Technology at the Office of the National Coordinator for Health Information Technology (ONC). “When looking at real-world data, we already know by the time data gets to a research database, it’s fairly poor. There is a lot of work that health professionals can do to help improve quality along the way.”  

USCDI+ Cancer will focus on several key targets including improving data in clinical trial recruitment/matching, enhancing collection of cancer registry data, and improving immune-related adverse event tracking in immunotherapy trials.  

The initiative builds upon another Biden Cancer Moonshot initiative, the Enhancing Oncology Model (EOM), a cancer care model centered on improving outcomes that also incorporates cancer data elements. The elements, which include treatment history, test results, and disease status, will form the core of USCDI+ Cancer.   

EHR vendors Epic, Oracle, Ontada, Meditech, Flatiron, and ThymeCare have all committed to the core EOM data elements and support USCDI+ Cancer. CVS Health and Athenahealth are also working to support the data elements in their work, according to ONC.   

“To achieve the bold goals set out by President Biden and First Lady Jill Biden as part of the Biden Cancer Moonshot, we must improve data standardization, interoperability, and sharing,” the White House said in the statement. “These actions will speed breakthroughs and deliver improved outcomes for those facing cancer.” 

How HI Professionals Come into Play 

As USCDI+ Cancer gets underway, it’s important that HI professionals dive into the details and learn as much as they can about the initiative, Turi says.  

“It’s really important they understand the concepts and the whys and understand where the data is going,” she says. “It’s not just for clinical care anymore. Some of these data are going to cancer registries that help facilitate policies and state and federal programs.”   

ONC and the National Cancer Institute are hosting an USCDI+ Cancer Data Exchange Summit this month that will include representatives across the data life cycle, Turi says. While in-person registration is limited, Turi encourages HI professionals to attend virtually, noting that all plenary sessions will be livestreamed.  

To prepare their organizations, HI professionals also can get involved in the standards work associated with the initiative and pay close attention to the USCDI+ Cancer data list that will soon be out, Turi says. Implementation guides based on the data list will be published later this year.  

HI professionals will also be key in mitigating challenges that arise as the data elements are implemented within organizations. The format of information exchange used for the data elements, for example, may pose obstacles for some organizations.    

Much of the USCDI+ Cancer data exchange will be used within the Fast Healthcare Interoperability Resources (FHIR) standard, Turi says. FHIR is a data standard for exchanging healthcare information electronically. In the short term, however, there may still be hybrid environments in which some data is being sent via spreadsheets, some via FHIR, and some via Consolidated Clinical Document Architecture (C-CDA). 

“The environment today is already relying on exchange of data via multiple formats – both in data structure and data content,” she says. “USCDI+ Cancer aims to reduce duplicative work and integration burden. Health information professions can start helping today by reviewing FHIR readiness and begin working with their health IT vendors to plan for support of USCDI+ Cancer.” 

It’s also a good idea to start working early with provider communities to ensure everyone is on the same page and are prepared for adoption, Turi says. Ensuring early alignment prevents later problems of being unprepared or unwilling to participate once the implementation guides are out. 

USCDI+ Cancer is in its early development stages, but ONC officials expect to have the data elements ready for public comment by this summer. For EOM, implementation guides will be ready and available at the HL7 FHIR Connectathon this month.   

Earlier Cancer Data Initiative Gaining Momentum  

USCDI+ Cancer is not the first initiative to target improved cancer data exchange. 

A data standard for oncology called Minimal Common Oncology Data Elements (mCODE) was launched in 2018 by the American Society of Clinical Oncology (ASCO) in collaboration with the MITRE Corp.    

mCODE was developed to improve the usefulness of oncology data, particularly care data reused for research purposes, says Robert Miller, MD, FACP, FASCO, FAMIA, chief medical science officer for CancerLinQ, a health technology company. Miller previously worked at ASCO and helped develop the initial mCODE specification.  

mCODE was recognized as an HL7 data standard for trial use in 2020 and has gone through several revisions, with the latest iteration coming out this spring, according to Miller. The data standard is currently available to any organization, software developer, or vendor to incorporate into their technology.  

About 70 organizations have implemented mCODE thus far, says Travis Osterman, DO, MS, FAMIA, FASCO, an oncologist, informatician, and chair of the mCODE executive committee. This includes academic institutions, community centers, payers, registries, and research organizations. 

HI professionals are central to mCODE, Miller says. In many cases, they are responsible for ensuring the data standard is being used, supporting clinicians and administrators in its implementation, and making sure workflows are optimized so that cancer data is collected in a way that it can be reused, he says.  

Implementing the data standard can come with obstacles, however. mCODE is an interoperable data layer that lives on top of FHIR profiles, Osterman explains. Organizations have variable support for implementing FHIR resources, and it can be challenging for some to initially integrate, he says.  

“It is work to connect new FHIR profiles to their existing data model,” says Osterman, who is associate vice president for research informatics at Vanderbilt University Medical Center in Nashville. “That’s probably the biggest pain point for implementers. Once it’s done once though, your ability to leverage mCODE for other projects is certainly exponentially improved.” 

Like any HI project, workflow and behavior change challenges can also arise, Miller adds. Using the data standard requires that data also be captured in a standardized way. Clinicians, for example, can sometimes struggle with the standardized capture of certain elements and using structured terminologies, Miller says.  

“Having clinician buy-in at organizations at the earliest stage is absolutely essential,” he says. “That’s probably the most important predictor of success.” 

Miller says he was encouraged to hear about ONC’s USCDI+ Cancer initiative, noting that the federal effort has a connection with mCODE. Some of the original mCODE elements are also in USCDI+ Cancer, he says.   

“Most of us are very encouraged that there is this White House push now behind cancer data interoperability, something that quite frankly, was not present when ASCO started mCODE,” he says.  

Miller encourages HI professionals to learn more about mCODE by joining CodeX Community of Practice (CoP), a group of stakeholders that shares experiences about mCODE. The group hosts monthly informational sessions, publishes a newsletter, and provides other resources about the data standard.  

Osterman foresees mCODE implementation continuing to grow.  

“We’re on year six, which is relatively young for a data standard, and we’ve seen incredible adoption,” he says. “The road ahead is very bright for our ability to improve the lives of patients with cancer.”  

Alicia Gallegos is a freelance healthcare reporter based in the Midwest.