Date: August 28, 2020
Time: 12pm ET
Attendees: (40)
non-MITRE Attendees
Name | Organization |
Steven Piantadosi (Cassandra O'Connell) | Alliance Data Innovation Lab |
keri Reardon | Alliance Data Innovation Lab |
Elly Cohen | breastcancertrials.org |
Anil Nair | CancerLinQ |
Robert Miller | CancerLinQ, American Society of Clinical Oncology |
Wendy Blumenthal | CDC |
Susan Stiles | Cerner |
Michael Dunphy | Count Me In |
John Methot | Dana-Farber Cancer Institute |
Julie Schneider | FDA |
Leah Nida | Flatiron |
Ariel Carmeli | Harvard Medical and Business Schools |
Michael Blake | National Comprehensive Cancer Network |
Evelyn Handel | National Comprehensive Cancer Network |
Nikola Cihoric | niAnalytics |
Robinette Renner | NMDP |
Ben Smith | Principia Health Sciences |
Kaushal Parekh | Roche Diagnostics Information Solutions |
Shaalan Beg | UT SOUTHWESTERN MEDICAL CENTER |
XXX-XXX-6011 | |
XXX-XXX-0989 | |
XXX-XXX-3786 | |
XXX-XXX-4177 | |
XXX-XXX-0490 | |
XXX-XXX-9757 | |
XXX-XXX-7723 | |
XXX-XXX-7732 |
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
Presentation Slides |
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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 - 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.
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
Name | Organization |
Anthony DiDonato | MITRE |
Steven Bratt | MITRE |
Salim Semy | MITRE |
Miranda Chan | MITRE |
Carmela Couderc | MITRE |
Michelle Casagni | MITRE |
Caroline Potteiger | MITRE |
Mark Kramer | MITRE |
James O'Connor | MITRE |
George Neyarapally | MITRE |
Gregory Shemancik | MITRE |
May Terry | MITRE |
Andre Quina | MITRE |
Zeshan Rajput | MITRE |
Sharon Sebastian | MITRE |
ROBERT DINGWELL | MITRE |
Paul Denning | MITRE |
Nicole Ng | MITRE |