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
- CIBMTR leading the charge on outreach to
- Presented to HL7 Public Health WG on 11/5 - interested in sponsoring this work
- PSS-1667 - Getting issue details... STATUS - project proposal here
- https://confluence.hl7.org/display/PHWG - workgroup details here
- 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
- Welcome to the new organizations joining the workgroup!
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
- The data requires a wrapper around it
- Robinette R - regarding the CIBMTR SoF App
- Reports labs and conditions
- Data elements reported aligned with US Core
- Reports labs and conditions
- 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
- HLA typing, more complex genomic data
- 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
- Biggest challenge we have for our cancer use case is in implementation
- 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
- Wendy S - We need to get outside ourselves to work with EHRs, vendors
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