Only 3% 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 the other 97% of 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.
A multi-stakeholder community is forming to address the need to obtain high-quality, computable data for cancer care and research. The community is called CodeX – the Common Oncology Data Elements eXtensions project within the HL7 Fast Healthcare Interoperability Resources (FHIR) Accelerator program.
Leveraging mCODE™ FHIR Implementation Guide standard, CodeX will expand around this core to encompass additional use cases, accelerating opportunities to create a learning health system based on interoperable data and improved patient care.
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 mCODE, 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