The mCODE data standard, once adopted across the oncology community, promises to greatly increase the amount of high-quality data for all cancer types, which can be used by clinicians and researchers.
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What is mCODE™?
mCODE is a core set of structured data elements for oncology that establishes minimum recommended standards for the structure and content of health record information across use cases and users. The goal of mCODE is to improve the overall quality and consistency of cancer data available to clinicians, patients, researchers, and other stakeholders in the fight against cancer.
mCODE, which is both a common language and a model, facilitates patient care and informs research by enabling analyses of data across the lifetime of a single cancer patient and across patient cohorts.
We have established mCODE as the standard, use-case-driven data element set that should be used to populate all electronic health records (EHRs) for patients with cancer. mCODE is based on an important data standard called FHIR (Fast Healthcare Interoperability Resources) created by Health Level 7 International (HL7), a widely recognized standards development organization working to improve global health data interoperability.
mCODE is open source, non-commercial, and highly collaborative. The mCODE initiative seeks to engage with, not replace, broader standards initiatives. We help to evaluate potential use cases, provide advice on improvement to interoperability and data collection, and provide advice on how better data can improve the quality of care.
Who developed mCODE?
mCODE has been developed by a multidisciplinary group of subject-matter experts, including oncology clinicians, informaticists, health services researches, experts in data standards and interoperability, and others under the auspices of the American Society of Clinical Oncology (ASCO). Also crucial to the development and implementation of mCODE are MITRE, the Alliance for Clinical Trials in Oncology Foundation, CancerLinQ, and the American Society for Radiation Oncology.
These team members have formed an Executive Committee, consisting of a small, agile group of four to seven public and private entities. They have voluntarily come together to further mCODE adoption. Members of the committee are expected to change out periodically to represent other stakeholders.
Who will maintain mCODE?
The mCODE Executive Committee will continue to oversee the development and maintenance of the official mCODE data dictionary for various use cases. However, as an open source concept made available under Creative Commons 0, the vision is that users will adopt, adapt, and improve on the versions of mCODE released by the Executive Committee to drive implementation of the mCODE standard and improve the quality and consistency of cancer data across platforms and use cases.
The mCODE Technical Review Group, a standing volunteer body appointed by the Executive Committee, is charged with development and maintenance of the mCODE Data Dictionary. This group works closely with the HL7 FHIR Accelerator Common Oncology Data Elements eXtensions (CodeX) group to expand and periodically evaluate the data dictionary.
For more information on how the Technical Review Group and CodeX work together, view the mCODE Submitted Use Case Proposal Review Process.
As an HL7 FHIR accelerator, CodeX is bringing together cancer data stakeholders to expand mCODE through new use cases to address current and emerging operational needs. For more information, please see: https://confluence.hl7.org/display/COD/CodeX+Home.
mCODE was approved by HL7 as a Standard for Trial Use (STU) in September 2019, and mCODE v1.0.0 was released in March 2020. The STU rating identifies mCODE as a data standard that is ready to be implemented.
Ultimately, participation in the mCODE initiative is open to any group that agrees to the principles in its charter and is willing to help improve and implement mCODE.
How is mCODE different?
We believe that the intersection of available technology and collaboration across stakeholders will make a difference for health data interoperability. Twenty years ago, the health care industry began developing interoperability standards to improve health care information exchange. However, the lack of data consistency was not acknowledged as a problem at the time. This has led to exchange standards that are flexible enough to allow the freedom to model the information in virtually any EHR system but lack a mechanism to harmonize differences across systems.
Because of the great variety of the data models within EHR systems, transferring information from one health IT system to another frequently results in information distortion or loss, blocking of critical details, or introduction of erroneous data. In addition to capturing too much information as free text, today’s health IT systems contain semantically incompatible information. This prevents practitioners and others from accessing relevant information across a patient’s journey, which in turn affects quality of care.
The approach of mCODE is to standardize the health records and health data themselves, rather than focusing on exchange standards. mCODE seeks to identify which data elements, at a minimum, should be present in every medical record to enable quality of care and determine how those elements should be recorded, and the mCODE initiative seeks to advise stakeholders across the oncology community on appropriate adoption of these standards. When the health record and data are standardized, exchange and aggregation of patient information should become cost effective and routine (as in every other industry that has gone digital).
What will help mCODE succeed?
The mCODE community recognizes that achieving consistency in health care data is a difficult problem to solve and is impossible without consensus across stakeholder groups. That’s why we’ve been working since the start of our initiative to engage with health care thought leaders and health care alliances, medical associations, standards organizations, providers, and vendor consortia.
We’re also building on existing standards. For example, the ONC Common Clinical Data Set, which mandates several types of information be exchanged during transitions of care, is a natural building block for mCODE. Other existing data models—such as the Federal Health Information Model, OMOP Common Data Model, Observational Health Data Sciences and Informatics “Common Data Model,” and FHIR resources—have provided important and valuable inputs.
How can I get involved?
There are many ways to get involved, from sharing your ideas to testing or implementing mCODE in the field to envisioning its future:
- Join the mCODE Council: The mCODE Executive Committee has created the Council to help guide mCODE’s evolution and adoption. This group provides thought leadership for mCODE, advises the Executive Committee, sponsors use cases, and promotes mCODE adoption. The Council also consults on new and amended data elements and use cases for the mCODE core data specification and its extensions. Individual Council members may participate in implementation pilots or champion the adoption of mCODE by various organizations. If your organization is interested in being considered for membership in the Council, please contact: firstname.lastname@example.org or go to the application form.
- Participate in implementation pilots: If you are interested in piloting or implementing mCODE within your organization, there are numerous opportunities. Please contact email@example.com. Visit the CodeX website to learn more about ongoing pilots and implementations.
- Join CodeX: This HL7 FHIR Accelerator convenes multi-stakeholder working groups representing patients, providers and health systems, researchers, payors, regulators, and EHR and IT vendors. Together, we identify critical use cases, develop and consult on high-quality FHIR Implementation Guides around mCODE, and test and demonstrate value by piloting work in the field. Through CodeX, mCODE initiative personnel are available to consult with your organization concerning implementing or customizing mCODE for specific use cases or advising on the utility of various applications for improving quality of care. For more information, contact firstname.lastname@example.org.
- Join the CodeX Community of Practice: The Community of Practice brings together health systems to discuss their experiences around mCODE. The community meets monthly to review the latest news relevant to mCODE, including changes to the standard, new use cases, and presentations from implementers. To learn more, please visit the home page here.
- Submit a Use Case: Help expand mCODE’s data dictionary by submitting a use case proposal to the mCODE Technical Review Group. The mCODE Technical Review Group will analyze the use case and provide advice regarding implementation of mCODE.
Where can I find mCODE?
mCODE is made available pursuant to the Creative Commons 0. Please go to the home page and the “Downloadable Information on mCODE” section for a link to the mCODE model and implementation information. We’d like users to register so we can notify you of updates and request feedback on your experience with mCODE.
Every Patient's Journey Can Improve All Future Care
Interested in joining the mCODE Council? Submit your application online.