How can we achieve a high level of interoperability in oncology data and use it to improve patient outcomes? By standardizing the data collected and shared between - laboratories, clinicians, researchers, and other stakeholders - enabling a learning health system.
FHIR Accelerators and Oncology
HL7 FHIR has gained rapid acceptance on a global scale as an innovative standard for enabling health data interoperability. HL7 created the FHIR Accelerator program to develop and assist communities across the global care spectrum to rapidly create and foster adoption of high-quality FHIR Implementation Guides that improve health care and research.
Oncology was the first specialty under the CodeX HL7 FHIR Accelerator. CodeX continues building a vibrant community to accelerate interoperable cancer data modeling and applications based on a common, standard language for cancer data - mCODE™, the minimal Common Oncology Data Elements, with supplemental Implementation Guides for particular Use Cases. Adoption of mCODE-based standards for cancer data collection and sharing will enable semantic interoperability between stakeholders and usher in step-change improvements in cancer care and research benefiting all cancer patients.
Why is Oncology Data Interoperability Crucial?
Cancer is a leading cause of death worldwide, accounting for nearly 10 million deaths in 2020 [WHO]. Cancer is the second leading cause of death among Americans. In the year 2000 , an estimated 552,200 Americans died of cancer. Each year, cancer costs our the United States an estimated $107 billion in health care expenditures and lost productivity from illness and death. [NCI]
Only 3-8% of adult cancer patients participate in clinical trials that gather high-quality data for cancer research. What if we could learn from the experiences of all 100% of cancer patients?
There are many barriers to collecting and sharing valuable patient data, including the inconsistent use or absence of data standards and the difficulty of transforming how we receive, access, and share patient information in a complex and non-interoperable healthcare system. Every interaction between a clinician and a cancer patient has the potential to provide data that could be used to improve care for that particular patient, as well as for all who follow.
Objectives
CodeX is assembling patients, providers and health systems, researchers, regulators, payers, electronic health record vendors and information technology innovators to:
Revolutionize cancer patient data collection, data sharing, and care by developing high-quality FHIR Implementation Guides, Reference Implementations, and pilots that demonstrate value
Leverage the capabilities of the mCODE FHIR IG, adding the additional data elements needed for new use cases
Exchange data through electronic health record (EHR) and other systems in an interoperable way
Streamline data collection to unburden workflows, while protecting patient privacy
Current Use Cases
CodeX Use Cases projects are Executing, or in the Planning or Discovery phases, with Members driving progress. Projects - ranging from collection of patient data for real-world-data clinical trials, matching patients with trials and registry reporting - demonstrate the potential to improve cancer care and research through via mCODE, necessary supplemental data elements and new workflows.
Information on all Use Cases can be found here.
Join Us and Lead the Quest for Smarter Oncology Data towards Improved Cancer Care and Research
How to Get Involved?
Contact Su Chen (suchen@mitre.org) - to get involved in shaping and to participate in CodeX Oncology Use Cases.
Contact the CodeX team at CodeX@HL7.org to discuss Membership options that will enable you and your organization to drive real impact within CodeX across Use Cases in Oncology and beyond.
