2020-08-28 CoP Meeting Notes

Date: August 28, 2020

Time: 12pm ET

Attendees: (40)

non-MITRE Attendees

Action items

• CoP September 2020 Meeting: September 25th from 12-1pm ET
• Reach out to Anthony DiDonato via email @adidonato@mitre.org if you would like to participate on future calls!
• Register for the Integrated Trial Matching for Cancer Patients and Providers open call to the public on September 16, 2020 at 1pm ET at this link. 

Planned Agenda Topics

Partnering with Patients to Accelerate Discoveries in Cancer Research. 

Presenter:

Michael Dunphy, Senior Manager, Count Me In.   https://www.broadinstitute.org/count-me-in 

Meeting Minutes

Anthony DiDonato, mCODE CodeX Community Lead, kicked off the meeting with an overview of the CoP, mCODE, CodeX and with announcements.

Steve Bratt, the HL7 FHIR CodeX Project Lead, welcomed attendees and provided an update on CodeX. mCODE Extractor is available on GitHub. CodeX Toolkit Implementers Working Group meeting on September 2. 

Michael Dunphy:

Count Me In is a non-profit organization comprised organized by the BROAD Institute, supported by Dana Farber Cancer Institute, Emerson Collective and the Biden Cancer Initiative.  https://www.broadinstitute.org/count-me-in 

Started as a grass roots movement to improve access to trials, and meet the needs of cancer scientific research, especially for patients who do not have access to an academic medical center. 

Creating a publicly available database of de-indentified, high-quality clinical data and patient reported outcomes. The patient's voice is a key component. Started with metastatic breast cancer in 2015. Since then, five projects have launched, one of which is a type pediatric cancer.

How do participants interact with Count Me In?

• Patients register on-line, consent to participate, participate.
• 1700 institutions have proved patient data
• Process is automated with the exception of medical records abstraction and procurement
• 75% of patient data is received by fax, then processed using optical scanners and text mining applications
  • Note: the 21st Century Cures Act provides incentive for change. USCDI is a good start, however unstructured notes still contain a great deail of information
• Patients select what they want to share using Patient Data Manager and Apple Health Record. 
• Data is available on 

  https://www.cbioportal.org/

  - visualization tool for clinical research data 

Count Me In is piloting the creation of mCODE records - making data available via Patient Data Manager and Apple Health Record.

One of many goals is to use data structured in mCODE to enable searching for clinical trials, another is automated curation. 

Q&A

Q: Has Count Me In considered the HL7 FHIR Structured Data Capture standard?

A: Not yet, it is on the roadmap. 

Q: Does the Cures Act compel the NGS labs to share genomic data or to share the VCF data with patients? 

A: No - the act does not call this out specifically.

Q: Does Count Me In see when the patients will be able to see their data and compare to others?

A: Yes, they are getting close to this - Count Me In is working on an application to help a patient visualize their data and compare to others in the cohort.  CBIO portal provides this information, however usability could be improved. 

https://www.cbioportal.org/

Q: Does Count Me In receive paper, or scanned images of paper charts?

A: 5% paper, 95% scanned images of text

Plug for USCDI review and suggestion submissions - deadline: October 9, 2020 at 11:59 pm ET

https://www.healthit.gov/isa/ONDEC USCDI ONDEC

MITRE Attendees