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Attendees: Trisha, Ingeborg, Jeff, William, Mike, Steve, Sam, Bill, Regina, Terek

Apologies: Chris, Joel, Mark


  • Share some information on SHARE & E2C
    • Use SHARE to Representing Mapping Meta Data
  • Sam will provide an update on his prototype
    • Put together a web app to collect the information
      • Want to include in the Deliverables
      • Capturing the Mapping Meta Data
      • Using Share to retrive the Mapping Data
      • Extended ODM to Represent the Mapping source Data

  • I’d like some input on what we’d like to do about the patient/subject matching step. It’s not really part of the scope to completely solve this problem, but I know Jeff has an interest in this and maybe we can do more than a purely manual mapping.
    • Pulling Patients from an FHIR ERH Systems and subjects from an EHR system and using the matching to create the subject resource
    • Jeff - This is also a problem in Clinical Research - Trying to figure out matching systems to figure out if the data matches the correct person
  • Where does this configuration happen?
    • Publishing this with the standards on within SHARE allows you to see where mapping has been embedded and where the standards are
    • Interest in extending CDASH
      • This becomes a three way map between the report form, CDASH Standard and FHIR
  • Steve - Be conservative in out matching approach
  • Trisha - We would need include a clause within the subject inform consent to show that we are access their EHR Data
  • Amy Norton at Duke may be a good contact for looking at the resource subject and study
  • Are Duke using the research study model?
  • Trisha - Duke is moving to the use of FHIR (how far along with this are they?)
  • Amy will be at the Connectathon in January

It would be good to know if we can pull a list of subjects from an EDC system as part of the test. Would this have the consent?

  • The consents there before they are enrolled there is no finer grain consent
  • Jeff - For federal studies we do capture the consent in our EDC system as part of our contract
  • Consent is for future deliverables - Add a few sentences at the end of the paper
  • There is not much consent reflected in the systems
  • The EDC system has a data field to put the data consent

Consent Resource in FHIR

  • FHIR Resource consent (maturity level 1)
  • VR&R owns the study resource
  • We need to include a paragraph at the end of the paper to show the issues with resource consent

EHR Patients do not want their EHR data accessed which makes it difficult for real world use Conform for consent for EHR study data and to use the data for a given study Is there a separate consent for EHR Data? This is beyond the scope of our project but we will need to keep in mind that it may affect consent We would need to write a policy that reflects the consent at the subject level Do we want to formally link the outputs of this work to the previous project (or just point out that this is a different front-end to the previous project)

  • Sam, Geoff, Terek and Trisha all to attend CSS
  • Looking to give outline and share goals of project allow 15 minutes (maybe 15 for Q&A)


  • Geoff - To write a paragraph on the issues with resource consent to include at the end of the paper