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Date

July 7th, 2020 

Time

12:30pm - 1:15pm ET

Attendees

ACS CAN → 

MITRE → 

Cancer Insights → 

BreastCancerTrials.org → 

TrialScope →

Action items

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Discussion notes in blueDecisions in greenAction items in red.

Planned Agenda Topics

  • <Hold for hot topics from project team>
  • Engagement Update
    • UCSF → Elly meeting with Adam and Leslie next week. 
    • UTSW → Caroline and Salim meeting with UTSW next week. 
    • Other updates? 
  • Phase 0 update
  • Confluence
  • Phase 1 Planning (continued) 
    • 1A Protocol and Pilot Process  
      • Draft study protocol and IRB submission 
      • Process of de-identification 
      • Plan out recruitment of patients – Mark to help?
        • Create a 1-pager targeted towards patients?  
        • Are patients needed for this phase? Or just data?  
          • If it's just data, all we need is access.  
          • Option 1 - Cancer Insights patients can get their data and share it with us.
            • Would need a waiver of consent from the IRB to share this data. Must be de-identified. 
            • Problem is that patients are giving us data, but we're not really giving much back. 
          • Option 2 - find sources of existing data. 
            • BreastCancerTrials.org may have data we can use.  
            • Ciitizen - could be a source of data. Mark has spoken to them.
              • MITRE has also had discussions with Anil Sethi when this project was just beginning. We could revisit this. 
          • Option 3 - find volunteers willing to share data.
            • ACS CAN has a lot of volunteers who would most likely be willing to share data.
            • However, to use ACS CAN's name, there would be many internal hoops to jump through, which would take a lot of time.  
      • Plan out onboarding of patients - where we left off on (8/31) 
      • Generate mCODE records for these patients
    • PCT Technical Readiness for 1A
      • ?
    • Cancer Insights Integration
      • Map Cancer Insights data model to generate mCODE
      • Address gaps using FHIR Questionnaire 
      • Create an agnostic interface
      • Integration with PCT component 
    • Standards Documentation 
      • Adjust documentation to be more trial matching service agnostic and patient portal agnostic
      • Develop a FHIR Implementation Guide for mCODE-enabling matching services
    • mCODE-enable Matching Services Suggestion: We may roll it into PCT Technical Readiness for 1A
      • Create sandbox
      • Map matching service to mCODE 


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