Date: May 8, 2019

Quarter:  Q3

Minutes Approved as Presented 

This is to approve minutes via general consent. "You have received the minutes. Are there any corrections to the minutes? (pause) Hearing none, if there are no objections, the minutes are approved as printed."


Report out on Common Clinical Registry Framework (CCRF)

Discussion items

5minIntroductions of AttendeesLindsey Hoggle

One attendee by phone

20 minReport out on CCRF ProjectAnita Walden and Chrystal Price

Please see power point slide deck :

  • CIMI Modeling
  • DAM
  • Substance Abuse Discussions
    • Working with CDISC

 Discussion of next steps Anita Walden and Chrystal Price

 Look to continue to do CIMI modeling but also USCore Modeling due to funding requirements and in preparation of moving to FHIR

Do we anticipate that registries will be utilizing FHIR for data exchange? There will need to be a significant amount of education to registries and vendors, however they would like the data elements.

One area that we might be able to assist is how to incorporate the data in an exchange format- append the DAM - but not specified a exchange format

Discussed with ONC and submitted to HL7 to submit to ONC. Expectation that this will take years to be incorporated. Appears that US Core is the best pathway from a timeline perspective to move forward.

This brings to DAM - if these elements are balloted by HL7 then they are available to use by others. Intent to ballot in Sept 2019 the Registry DAM. Does the current PSS cover this ballot? Could the current DAM be updated in time for the Sept ballot? Approximately an additional 50 data elements. One concern is that there is no WGM between now and Sept and therefore there will need to be consensus of the information submitted ballot over the telephone. Rationale of targeting Sept ballot is to have the US Core begin their work on this project. Should have a conversation with USCore to confirm how they would like the information to be represented. Believe that US Core is going to ballot in Sept 2019. Can they do add on profiles?

Question is putting this into a DAM make it easier to create a CIMI model? No it is not a requirement. It does make the process easier.

Discussion on the mapping of the data elements to FHIR. Identified some gaps. Some of the data elements identified in FHIR are not common among registries. This could become the US Core FHIR implementation guide. Also want to be sure to point out any gaps between FHIR and USCore.

If we concentrate on tobacco elements for the Sept ballot will this be a more reasonable scope. Agreed that this scope is more manageable. Facilitators recognize that some additional work is needed now that they understand what is required for balloting.

The work from this project can be reused by many of the other use cases of secondary use of EHR data. This is why CDISC has been engaged to work on this project.  

 Is there an interest in implementing? Community

 There are some grant opportunities from AHRQ that could be used for implementation of these data elements.

There may be a small subset of registries to participate- PCPI could help to identify those with interest

 Substance Use
 US Core was interested in this project team working on substance abuse after reviewing the tobacco use deliverables. The project team feels that this is a large scope of work and will need to be a separate project. Thought/recommendation to write a draft of a PSS for this scope of work.


Action items

  • @Anita Walden to share slides from the presentation on the CCRF project

  • Amy Cramer to post the slides to CIC Confluence
  • @Anita Walden to confirm that the current PSS will cover this ballot - intended for Sept 2019.