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 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.
CodeX is a growing, multi-stakeholder community, working together to enable high-quality, computable data for cancer care and research. CodeX is one of the early members of the HL7 Fast Healthcare Interoperability Resources (FHIR) Accelerator program. Leveraging mCODE™ FHIR Implementation Guide standard, the CodeX community is expanding around the mCODE core to enable collection of cancer patient data once and reusing the data for multiple, high-priority Use Cases .
CodeX is assembling patients, providers and health systems, researchers, regulators, payers, electronic health record vendors and information technology innovators to:
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.
The Steering Committee, representing key stakeholders, prioritizes CodeX activities, approves use cases and projects, monitors progress, reports status to the CodeX Members and decides which products should go to HL7 for formal standardization.
The Operating Committee, with one representative from each CodeX Member, proposes use cases, project plans and deliverables, artifacts for standards development, and handles funding requests considered by the Steering Committee. The Operating Committee also facilitates staffing of projects with in-kind personnel from Members and others in the community.