July 7th, 2020
12:30pm - 1:15pm ET
ACS CAN →
Cancer Insights →
Discussion notes in blue. Decisions in green. Action 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
- If you haven't already, please use this link to create a Confluence account - https://jira.hl7.org/secure/CreateIssue.jspa?pid=11200&issuetype=11300
- Caroline will then grant permission to your accounts to access the private page.
- 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