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Registry Reporting Workgroup Kickoff


October 27th, 2020


11:00am - 12:00pm ET


  • 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, 

Action items

  •  Gregory Shemancik  → send meeting invite for Leadership call 11/4 at 3pm ET 
  • Gregory Shemancik  → send meeting invite for All Work Group call 11/12 at 11am ET – and biweekly starting 11/25 at 9am ET

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

Planned Agenda Topics

  1. Welcome (10min)
    1. Introductions and Level Set
  2. Recap of Current Progress (25min)
    1. CDC - MedMorph
    2. CIBMTR - Data Transformation Initiative
    3. Codex Updates/Approach to combining efforts
  3. Confluence Review
    1. Resources Available
    2. Project Plan
    3. Communications
  4. Structure and Organization of Regular Work
    1. Biweekly Organization
  5. Next Steps


MITRE: Greg Shemancik, Sharon Sebastian, Andre Quina, Rob Dingwell, Michelle Casagni, Steve Bratt, George Neyarapally, Anthony DiDonato

CIBMTR: Kristina Bloomquist (co-lead), Robinette Renner (lead), Bill Burgess (tech lead for FHIR submission), Bridget (senior relationship manager), Thomas Wiegand (project manager overseeing FHIR projects), Ben Smith (lead IQVIA team supporting CIBMTR in its data transformation initiative)

CDC: David Jones (health informatics, supporting informatic projects to help support central cancer registries, Wendy Blumenthal (lead, also co-lead MedMorph)

Recap of Current Progress

CIBMTR – a lot of their sites are using form-based process to transport data

CDC – interested in reporting from state registries, but high burden and not interoperable. The desired impact is to track patient parameters and desired outcomes

CDC - MedMorph

  • CDC-wide project, Wendy is co-lead of this project
  • Goal: come up with a common way to get EHR data for both research and public health
    • Addressing the problem that PCOR and public health professionals need a better way to get data from different electronic EHR systems without imposing burden
  • Current status of MedMorph: completed the first draft for 3 main use cases: cancer reporting, healthcare surveys, and HepC reporting
    • Identified common data elements for each of these main use cases for submission to USCDI
    • All 3 projects have workflow tables, activity diagrams, and sequence diagrams
  • Specifically, the MedMorph cancer use case:
    • Purpose: transmit cancer care information to state central cancer registries
    • Goal: (1) identify missed cases and treatment and (2) provide data faster for research and public health
    • Scope: collect standardized data on all types of reportable cancers diagnosed and/or treated
      • Identify standard data elements to be retrieved from EHR to registry report
    • Additional cancer use case accomplishment:
      • Developed/completed 5 main workflows describing actors and their interactions
      • Preparing for January HL7 ballot
    • Finally, MedMorph has created both a short term (under 3 years) and long term (over 3 year plan) for this project
    • Next steps:
      • MedMorph FHIR IG Connectathon on 11/9/20
      • Ballot IG in 1/21/ for HL7 ballot cycle
      • Develop content IGs for each of 3 use cases
      • Pilot implementations to test reference architecture
        • Only have funding for HepC use case
          • Wendy can see CodeX as avenue to fund and expand on the piloting of the cancer use case for MedMorph

CIBMTR - Data Transformation Initiative

  • Organizational background:
    • CIBMTR is the research collaboration between Be The Match and the Medical College of Wisconsin
      • Be The Match: is the world’s largest registry of potential bone and marrow donor data
    • Manages longest-running transplant and cellular therapy outcomes database
    • Unique donor-recipient biospecimen repository
  • Data Transformation Initiative:
    • Reduce burden to centers
    • Data integrity assured
    • Lower costs
  • Goal of Data Transformation Initiative (DTI): get data from transplantation site to the CIBMTR database
    • Currently, this process is completely manual
    • So, we moved forward creating a recording app in the App Orchard, which leverages the Epic FHIR servers to pull in FHIR data directly from the EMR into the CIBMTR database
      • Also working to pull in lab data
      • Main focus: building out this reporting app – so we can best align with U.S. Core
      • Focus Area 2: building out a data dictionary
        • In conjunction with the data translation application we created – using OMOP
      • Focus Area 3: we developed an HML to FHIR conversion
        • HML is an XML-based language that CIBMTR developed
          • CIBMTR took existing format used by their sites and converted to FHIR to move into the FHIR server
        • Focus Area 4: developing a direct FHIR submission so we can take all types of data being used and send it to us using FHIR
      • Looking forward to working with CodeX so we can help further facilitate the exchange of data from any state registry

Codex Updates/Approach to combining efforts

  • Approach: Create one solution that can submit registry reporting data to a state registry and private registry
    • leveraging an easy to use solution using FHIR to submit this data
  • Best way to do this is expanding on the existing work that has been done with MedMorph and CIBMTR 
    • Being able to combine the two to submit data in a low burden way across multiple sites

CodeX updates:

  • In the process of convening an operating committee (December/January)
  • Work on adverse events is coming through, highlighting CTCAE
  • Engagements: number of health systems we’re talking to
    • Also know CDC has been in contact with state registries
  • Received feedback on project proposal and will report to HL7 shortly

Confluence Review

  • CodeX private space:
    • In general: this space is used for planning out entirety of work/information that’s not quite ready to be shared yet
      • Planning section: consists of tasks, responsibilities, results, and status
        • We set up the use case champions, the workflow diagram, created our confluence page, high level project plan is completed, and continuing to determine which stakeholders are needed
      • Registry reporting documents:
        • Project management information, phase 1 content, presentations, and mCODE mapping
      • Phase 0 work – the Proof of Concept
        • Data to be sent to private and state registry using the created proposal
        • With the architecture we’re creating, we look for CIBMTR to champion health systems and CDC to champion the state registries
        • Getting into the actual data use: we have developed a synthetic patient module specifically for CAR-T, and we are currently reviewing this data with expert oncologists
          • We can display and provide demos of the work we’ve done with the synthetic patient data
            • Wouldn’t have to immediately worry about the rapid onboarding of health systems by using this approach
          • We anticipate having this proof of concept completed by ~March 2021
          • We want to share our results to the community:
            • Schedule public calls
            • Demonstrate project updates to Community of Practice
            • Draft an IG
          • Phase 1 of work:
            • Get health systems involved
            • Look into expanding capabilities (triggers, FHIR subscriptions, utilizing mCODE extraction tool to pull data out of systems)
            • We should begin determining what are the specific data elements necessary and the different options for how we will pull data out of the EHR

Communications / Structure of regular work

  • Use Confluence for meetings, content, etc.
  • HubSpot for engagements
  • Get access to JIRA for work group tasks
    • Hoping to have a CodeX dashboard soon
  • Biweekly structure:
    • Week 1: WG meeting
    • Week 2: leadership call


Wendy: Do we not plan on bringing in state registries until later?

  • Greg: We would need state registry as an endpoint
    • Wendy: We can also provide an endpoint. We have a tool that currently processes other formats to be able to process a FHIR format. We’re also working on development of a cloud platform for FHIR endpoint
      • Greg: we can start rolling out the cloud-based platform into our current plan of work

Rob: Knowing MedMorph has cancer reporting use case, how do you see potential duplication of work?

  • Wendy: 3 focus areas --> 1) incorporating MedMorph architecture into CodeX project (trigger based recording) 2) starting to do the content IG specific development soon (for cancer content IG, I envision us starting with mCODE for data element structure aspect, and if we see gaps, we might propose as possible changes to expanding mCODE) and 3) MedMorph doesn’t have resources to test for cancer, so I see this as the place that testing can directly fit in

Robinette: we’re working on scheduling meetings with a few interested parties

Wendy: we have a non-profit we’re talking with and would be a great organizational fit – they don’t have funding to pay – but would be interested to work on CodeX, if they have the bandwidth

Next Steps

  • Leadership call 11/4 3pm ET
  • All Work Group call: 11/12 11 am ET
  • Biweekly All Work Group calls (moving forward): biweekly starting 11/25 at 9am ET
  • Technical architecture component:
    • We should have subgroups to convene in due time
      • Rob, Michelle, Sharon to begin coordinating these as well

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