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Date: 29 May 2020


Attendees (non-MITRE):



Ben TsaiUCSF
Courtney DavisASCO
Tarun KumarVizlitics
Wendy Ver HoefNCI CBIIT contractor, Samvit Solutions
Brandi CantarelUTSW
Lilian SiuPrincess Margaret Cancer Centre
Marie SugaKaiser Permanente 
Melanie HullingsUTSW
Robert MillerASCO
Ryan BernardEpic
Monica BertagnolliAlliance for Clinical Trials in Oncology
Dinesh KotakKaiser Permanente 
Brian GardnerCerner
Kerry RoweIntermountain Health
Maria MichaelsCDC
Shelley HwangDuke
Wendy BlumenthalCDC
Sean MuirJKM Software
Joe RogersCDC
Tatyana SandlerMSK
Susan StilesCerner
Shilpa MahatmaVizlitics
Jim HaymanUniversity of Michigan Medicine
Shauna HillmanAlliance SDMC /Mayo
Ray LiuKaiser Permanente
Joe RogersCDC
Keri ReardonAlliance for Clinical Trials in Oncology
Rimma BelenkayaMSK
Megan WilliamsMayo
Michael AswellFoundation Medicine
Nadia ZnassiPrincess Margaret Cancer Center


Time (mins)


Notes/Action Items

12:00 Announcements/Welcome/Zeshan Rajput
12:05CodeX Update/Steve BrattUse case status overview (see slides)
12:10Registry Reporting/Greg Shemancik

Work started with CIBMTR - private, not for profit registry, focused on non-solid cancers, CAR-T. 

Addressing high burden data collection for reporting.

Starting with mCODE subset, Cancer Disease Status and Treatment Plan Change. 

CIBMTR Reporting SMART(R) on FHIR application in the Epic App Orchard. 

Leveraging existing work

Monica Bertagnolli (ASCO) Cancer Link Board meeting: one of the essential uses of Cancer Link is to enable members reporting. ASCO and Cancer Link are very interested in participating.

Bob Miller: (Cancer Link) - seconds Monica's comments. 


MedMorph/Wendy Blumenthal and Maria Michaels (CDC)


Making EHR Data More Available for Research and Public Health

Funded by PCORTF (Patient-Centered Outcomes Research Trust Fund (via HHS))

More detail in slide deck than covered in session.

  1. Deliver actionable knowledge (guidelines, recommendations, etc.)
  2. EHR acts on patient data
  3. Analyze data to advance guidance and update scientific evidence

Unifying OHDSI, OMOP, i2b2, ACT, PCORnet

Leveraging FHIR, automating as much as possible, limit the proliferation of implementation guides (IG), accounting for implementation variability


  1. Reference architecture
  2. Reference implementations
  3. Balloted IGs
  4. Roadmap for sustainability

Work groups organized around

  • use cases:  Hepatitis C, Cancer and Healthcare Surveys
  • technical requirements: data flows, data standards, reference architecture

Wendy (cancer use case)

All cancers are reportable (longitudinal)

Multiple public registries - CDC, National Program of Cancer Registries (NPCR), SEER

Pathology reports are becoming an important data source.

Standard use (CDA, FHIR) not wide spread or consistent.


Limited uptake/implementation by providers and EHRs. 

Workflow triggers and information dissemination are key issues targeted by MedMorph

Focusing on transmission of information not easily available now. 

Will base data elements on NAACR data dictionary.

12:45Community discussion

Susan Stiles (Cerner): Are we hoping that with some of the reporting to CDC, do you see that going through Cancer Registry software, or getting most of the data from the EHR?

Answer: CDC only gets aggregated data from the states. State registries get detailed patient data which they send on to CDC.

Bob Miller: is the expectation that a FHIR IG will be created, is the expectation that FHIR will be used to transmit information to transmit from the EHR to state registries? 

Discussion: EHR to hospital registry first, or EHR to state registry? Would standard registry software currently in use be bypassed? 

Answer: no - hospital registry reporting and activities will remain. This will be helpful where there is no hospital registry, or with free-standing practices. This IG might be useful for the EHR to report to the hospital registry, and to the state. Open questions.

Maria Michaels: trusted third party is part of the architecture (which could be an intermediary between the EHR and the state registry)

Joe Rogers: states will have different reporting requirements. CoC facilities require that a hospital registry be in place. 

Wendy B: in theory, if the hospital registry vendors are interested in building this interface (per the IG) with their EHR, it could improve hospital registry collection

Susan Stiles: they are talking with the hospital registry vendors - exploring whether they are considering transforming to FHIR

Wendy B: interested in connecting

12:54Meeting adjourned

Next meetingJune 26 at noon EDT

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