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Initiative Overview
The aim of this initiative is to determine how health how health information derived from a wide variety of data sources can be used for PCOR /and comparative effectiveness research (CER), consistent with principles of bioethics ethics and the legal requirements governing privacy of health information, including patient consentand regulatory requirements related to patient consent, privacy, and autonomy.
- 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 and encompass PCOR and CER;
- Identifying necessary policies and requirements to enable data use in research;
- Defining the
- gaps and needs in policies and ethical and legal requirements; and
- Identifying instances where technical components intersect policy requirements
- , referencing relevant technical specifications
- as needed.
Project Contacts
Please reach out to the contacts below if you have any questions about the initiative.
Contact Information | ||||
---|---|---|---|---|
Prashila Dullabh, | ||||
Role | Name | |||
Project Director | Prashila Dullabh | dullabh-prashila@norc.org | ||
Project Manager | Lauren Hovey | hovey-lauren@norc.org | ||
Ioana Singureanu, Data Scenario Analysis and Facilitator | ioana@eversolve.com | |||
Daniella Meeker, PCOR Research Lead | dmeeker@usc.edu | |||
ONC Lead | Helen Caton-Peters, ONC Staff Lead | Helenhelen. | Catoncaton- | Peters@hhspeters@hhs.gov |
Stakeholder Liaison | Katherine Donaldson | donaldson-katherine@norc.org | ||
Collaboration Site Contact | Gagan Jindal | jindal-gagan@norc.org |
Gagan Jindal, Collaboration Site Contact | jindal-gagan@norc.org |
Katherine Donaldson, Stakeholder Liaison | donaldson-katherine@norc.org |
Meeting Schedule
*NOTE: All times below are in Eastern Standard Time.
Workgroup Meeting | Date and Time |
---|---|
Meeting 1 (Kickoff) | Tuesday, December 1, 2015 |
Meeting 2 | Wednesday, December 16, 2015 |
Meeting 3 | Wednesday, January 6, 2016 |
Meeting 4 | Tuesday, January 19, 2016 |
Meeting 5 | Wednesday, February 3, 2016 1:00pm-2:00pm EST |
Meeting 6 | Wednesday, February 17, 2016 1:00pm-2:00pm EST |
Meeting 7 | Wednesday, March 2, 2016 1:00pm-2:00pm EST |
Meeting 8 | Wednesday, March 16, 2016 1:00pm-2:00pm EST |
Meeting 9 | Wednesday, March 30, 2016 1:00pm-2:00pm EST |
Meeting 10 | Wednesday, April 136, 2016 |
Meeting 11 | Wednesday, April 2720, 2016 1:00pm-2:00pm EST |
Meeting 12 | Wednesday, May 11April 27, 2016 1:00pm-2:00pm EST |
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