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  1. Project Scope Statements/Proposals
  2. PSS-1667

CodeX - Cancer Registry Reporting

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    • Project Proposal
    • Status: Accepted
    • Medium
    • Resolution: Done
    • None
    • Public Health
    • May 2021
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      There are numerous barriers to reporting necessary patient information to cancer registries for research and public health purposes. For reporting to clinical registries and for reporting from non-hospital sources to state registries, the process is largely forms-based or uses other non-standard methods, and sometimes requires manual completion of paper forms, along with manual submission to each registry. These lengthy procedures are burdensome for data managers and healthcare providers and result in substantial delays in reporting. For example, it can take state registries 24 months to publish cancer patient data for public benefit, including cancer surveillance and research. This drastically limits the potential to learn from the outcomes of existing intervention strategies and treatments on a patient’s health. This is especially important as new drugs and other treatments are approved each year and the standard of care frequently changes.
        
      The CodeX HL7 FHIR Accelerator Registry Reporting use case will enable low-burden, standardized, automated reporting of cancer data from cancer centers and other providers who diagnose or treat cancer, to registries, leveraging the mCODE oncology data standard with additional strategically selected, registry-specific data element extensions. This solution will meet the needs of a wide variety of registries, including those focused on standards of care, public health, clinical trials, post-market surveillance, quality reporting, comparative effectiveness, and other critical areas.
        
      The effort will be informed by a stakeholder workgroup that collaborates on multiple phases of work, resulting in a standardized and scalable low-burden approach for registry reporting of mCODE and extended elements via FHIR. The first phase of work focuses on a proof of concept, where a subset of current mCODE-compliant data elements will be sent via FHIR to both a private and state registry, demonstrating that mCODE data can be implemented in a registry-agnostic process. The second and longer phase of work will expand the set of reportable data elements to include the full mCODE set, along with extensions to mCODE in specific areas of interest for private, state, and other registry types. Phase two will also add the capability to “trigger” data elements communicated to state registries, based on and leveraging the reference architecture in development by the Making EHR Data More Available for Research and Public Health (MedMorph) project, supporting timely and low-burden reporting that will benefit data managers and patients alike. The end result will be full mCODE support with extended elements implemented in a registry-agnostic format, including added capabilities such as mCODE extraction and triggering for data reporting. A third phase of work will expand on this progress, adding health systems and all registry types to continue piloting, standardizing, and scaling this solution.

      Resulting products will include a 1) Reference Implementation defining this low-burden registry reporting methodology and associated services including mCODE compliance, and 2) new FHIR implementation guide (IG) based on mCODE that includes extended data elements for registry reporting needs.

      For more information, please see:
      http://hl7.org/fhir/us/mcode/
      https://confluence.hl7.org/display/COD/CodeX+Home
      https://confluence.hl7.org/display/COD/Cancer+Registry+Reporting
      https://confluence.hl7.org/display/FHIR/Making+EHR+Data+More+Available+for+Research+and+Public+Health+%28MedMorph%29+Reference+Architecture
      Show
      There are numerous barriers to reporting necessary patient information to cancer registries for research and public health purposes. For reporting to clinical registries and for reporting from non-hospital sources to state registries, the process is largely forms-based or uses other non-standard methods, and sometimes requires manual completion of paper forms, along with manual submission to each registry. These lengthy procedures are burdensome for data managers and healthcare providers and result in substantial delays in reporting. For example, it can take state registries 24 months to publish cancer patient data for public benefit, including cancer surveillance and research. This drastically limits the potential to learn from the outcomes of existing intervention strategies and treatments on a patient’s health. This is especially important as new drugs and other treatments are approved each year and the standard of care frequently changes.    The CodeX HL7 FHIR Accelerator Registry Reporting use case will enable low-burden, standardized, automated reporting of cancer data from cancer centers and other providers who diagnose or treat cancer, to registries, leveraging the mCODE oncology data standard with additional strategically selected, registry-specific data element extensions. This solution will meet the needs of a wide variety of registries, including those focused on standards of care, public health, clinical trials, post-market surveillance, quality reporting, comparative effectiveness, and other critical areas.    The effort will be informed by a stakeholder workgroup that collaborates on multiple phases of work, resulting in a standardized and scalable low-burden approach for registry reporting of mCODE and extended elements via FHIR. The first phase of work focuses on a proof of concept, where a subset of current mCODE-compliant data elements will be sent via FHIR to both a private and state registry, demonstrating that mCODE data can be implemented in a registry-agnostic process. The second and longer phase of work will expand the set of reportable data elements to include the full mCODE set, along with extensions to mCODE in specific areas of interest for private, state, and other registry types. Phase two will also add the capability to “trigger” data elements communicated to state registries, based on and leveraging the reference architecture in development by the Making EHR Data More Available for Research and Public Health (MedMorph) project, supporting timely and low-burden reporting that will benefit data managers and patients alike. The end result will be full mCODE support with extended elements implemented in a registry-agnostic format, including added capabilities such as mCODE extraction and triggering for data reporting. A third phase of work will expand on this progress, adding health systems and all registry types to continue piloting, standardizing, and scaling this solution. Resulting products will include a 1) Reference Implementation defining this low-burden registry reporting methodology and associated services including mCODE compliance, and 2) new FHIR implementation guide (IG) based on mCODE that includes extended data elements for registry reporting needs. For more information, please see: http://hl7.org/fhir/us/mcode/ https://confluence.hl7.org/display/COD/CodeX+Home https://confluence.hl7.org/display/COD/Cancer+Registry+Reporting https://confluence.hl7.org/display/FHIR/Making+EHR+Data+More+Available+for+Research+and+Public+Health+%28MedMorph%29+Reference+Architecture

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            carmela_couderc Carmela A. Couderc
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