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Registry Reporting All Workgroup Meeting

Date

November 12th, 2020

Time

11:00am - 12:00pm ET

Attendees

  • MITRE → Greg Shemancik, Sharon Sebastian, Andre Quina, Rob Dingwell, Michelle Casagni, Steve Bratt, George Neyarapally, Anthony DiDonato
  • CIBMTR → Kristina Bloomquist, Robinette Renner, Bill Burgess, Thomas Wiegand, Ben Smith, Bridget Wakaruk
  • CDC→ David Jones, Wendy Blumenthal, Wendy Scharber (Contractor)
  • California State Cancer Registry → Timothy Davidson
  • UCSF → Nina Shah, Charalambos (Babis) Andreadis

Action items

  • Greg Shemancik to reschedule workgroup to California friendly time of day (FindTime to follow)
  • David Jones to reach back to Wendy Blumenthal/MedMorph team on mapping progress
  • Greg Shemancik to work with Rob/Michelle to schedule a separate technical architecture discussion
    • Technical deep dive - MedMorph architecture, CIBMTR SoF app
  • All members - By Dec 1st determine "wish list" of data elements/domains to be extended in Phase 1 of work (beyond mCODE)
  • All members - Determine Phase 0 terminology, demographic options #1 and #2
  • Bridget Wakaruk and CIBMTR engagement team to update Greg on health system outreach


Discussion notes in blue. Decisions in green. Action items in red.

Standing Agenda

Use Case Updates (~10min) – Greg Shemancik

  • Updates

  • Upfront items from group? 

Technical Architecture and FHIR Implementation (~20min) – Rob Dingwell/Michelle Casagni

  • Updates 

  • Challenges

  • New Business/Next Steps

Terminology and Mapping (~20min) – Sharon Sebastian

  • Updates

  • Challenges

  • New Business/Next Steps

Wrap-up/Next Steps (~10min) – Greg Shemancik

Notes

Use Case Updates

  • Updates

    • Welcome to the new organizations joining the workgroup!
      • California State Cancer Registry - Tim Davidson
      • University of California, San Francisco - Nina Shah, Babis Andreadis
      • CDC Contractor - Wendy Scharber, providing technical support
    • Additional coordination on new organizations - in particular health systems
      • CIBMTR leading the charge on outreach to 
        • UCLA
        • Stanford
        • City of Hope
        • Children's of Colorado
    • Presented to HL7 Public Health WG on 11/5 - interested in sponsoring this work
    • Digital Bridge - https://digitalbridge.us/about/
      • Coordinating complimentary registry reporting work, led by fellow CodeX member CDC
      • Potential to provide valuable vendor support/added capabilities 

  • Upfront items from group?

    • None 

Technical Architecture and FHIR Implementation (~20min) – Rob Dingwell/Michelle Casagni

  • Updates/Challenges

    • Michelle - provided overview slide of strategic questions for technical architecture
    • Would be useful to have an overview of technical architecture for MedMorph
    • CIBMTR Goals include:
      • Collecting data in a standardized way
      • There are a lot of registries out there, need to allow centers to report to CIBMTR and other registries (registry agnostic)
    • Bob M - transplantation centers are ready to submit data to CIBMTR
      • What we need is to relieve burden by using more common data standards 
      • Keep in mind there is a separate log in needed to CIBMTR
        • Aside from SoF (SMART on FHIR) connection - also connection for patient matching, authentication/authorization to consider
    • David J - for Medmorph patient matching is not included in IG at this time
      • Triggering of events which corresponds to patient downstream
    • Rob D - at a general level need transport mechanism for sending data - FHIR messaging
      • The data requires a wrapper around it
        • Knowledge artifacts, subscriptions, etc
      • Can always approach technical architecture in a piecewise fashion 
        • With SoF app can start with message bundle, and extend from there
    • Robinette R - regarding the CIBMTR SoF App
      • Reports labs and conditions
        • Data elements reported aligned with US Core
    • CIBMTR goals this year include:
      • Getting more transplant centers to use our app
      • Goal of 25 transplant centers to be onboarded with current app
        • To collect patient registration, observations, and other data elements
        • Expand app to make more vendor agnostic - perhaps starting with Cerner
        • Preparing direct FHIR submission endpoint
        • Enable labs to directly send data 
          • HLA typing, more complex genomic data
            • We are working with one lab to do this already
    • MedMorph goals this year include:
      • Biggest challenge we have for our cancer use case is in implementation
        • Our existing work does not include an implementation scoped into it
        • How can we take the MedMorph implementation guide and architecture, and go about implementation?
          • We see CodeX as being key for this
      • Wendy S - we have selected cancer data elements, and made some progress on mapping FHIR Resources/mCODE
        • Wendy Blumenthal/MedMorph team would be able to provide
    • Rob D - What does implementation entail? Does it mean implementing triggers specifically?
      • Wendy S - We need to get outside ourselves to work with EHRs, vendors
        • Work towards definitions and placing in format
        • Currently - we have an IG that is in xml, and have discussed clinical trials
      • David J - we have demonstrated an electronic initial case report
        • Tested in recent connectathon for cancer domain, not exhaustive list of elements 
        • Lab reporting proved challenging 
        • Trying to streamline/structure, and include treatment data from first course of treatment 

Terminology and Mapping (~20min) – Sharon Sebastian

  • Updates/Challenges

    • Include SSN would be valuable for identifier
    • Medicare Beneficiary ID now being used more readily, another option
    • CIBMTR collects all of Option 2 (See Sharon's Slides) but redact some elements
      • Moving forward, will assume Option 2 approach to Phase 0 
      • Also implement CIBMTR ID (CRID)
      • Going forward need to consider who owns the data and appropriate legal processes
        • Legislatively mandated for state reporting
        • Benefit to using synthetic data initially
    • Consider connectathon - January - 2021-01 Connectathon 26

Wrap-up/Next Steps (~10min) – Greg Shemancik

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