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Initiative Overview
The aim of this initiative is to determine how health information from a variety of data sources can be used for PCOR/CER, consistent with principles of bioethics and the legal requirements governing privacy of health information, including patient consent.
- Phase 1:
- Develop 15-20 research data use scenarios that pertain to PCOR and CER
- Phase 2:
- Assess the legal, regulatory, and policy environment governing the use of health information for PCOR/CER
- Develop a legal and ethics framework for protecting patient privacy during conduct of PCOR/CER
As a member of the stakeholder group, you will participate in the activities related to Phase 1, including:
- Identifying research data use scenarios that are patient-centric
- Identifying necessary policies and requirements to enable data use in research
- Defining the problems and needs
- Identifying instances where technical components intersect policy requirements; referencing relevant technical specifications, as needed
Project Contacts
Role | Name | |
---|---|---|
Project Director | Prashila Dullabh | dullabh-prashila@norc.org |
Project Manager | Lauren Hovey | hovey-lauren@norc.org |
ONC Lead | Helen Caton-Peters | |
Stakeholder Liaison | Katherine Donaldson | donaldson-katherine@norc.org |
Collaboration Site Contact | Gagan Jindal | jindal-gagan@norc.org |
Meeting Schedule
*NOTE: All times below are in Eastern Standard Time.
Meeting | Time |
---|---|
Meeting 1 (Kickoff) | Tuesday, December 1, 2015 |
Meeting 2 | Wednesday, December 916, 2015 |
Meeting 3 | Wednesday, December 23January 6, 20152016 |
Meeting 4 | Wednesday Tuesday, January 619, 20152016 |
Meeting 5 | Wednesday, January 20February 3, 20152016 1:00pm-2:00pm EST |
Meeting 6 | Wednesday, February 317, 20152016 1:00pm-2:00pm EST |
Meeting 7 | Wednesday, February 10March 2, 20152016 1:00pm-2:00pm EST |
Meeting 8 | Wednesday, February 24March 16, 20152016 1:00pm-2:00pm EST |
Meeting 9 | Wednesday, March 230, 20152016 1:00pm-2:00pm EST |
Meeting 10 | Wednesday, March 16April 13, 20152016 |
Meeting Meeting 11 | Wednesday, March 23April 27, 20152016 1:00pm-2:00pm EST |
Meeting Meeting 12 | Wednesday, March 30May 11, 20152016 1:00pm-2:00pm EST |
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