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Initiative Overview

The aim of this initiative is to determine 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 ethics and legal and 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:

  1. Identifying research data use scenarios that are patient-centric and encompass PCOR and CER;
  2. Identifying necessary policies and requirements to enable data use in research;
  3. Defining the gaps and needs in policies and ethical and legal requirements; and
  4. 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, Project Directordullabh-prashila@norc.org
Ioana Singureanu, Data Scenario Analysis and Facilitatorioana@eversolve.com
Daniella Meeker, PCOR Research Leaddmeeker@usc.edu
Helen Caton-Peters, ONC Staff Leadhelen.caton-peters@hhs.gov
Lauren Hovey, Project Managerhovey-lauren@norc.org
Gagan Jindal, Collaboration Site Contact jindal-gagan@norc.org
Katherine Donaldson, Stakeholder Liaisondonaldson-katherine@norc.org

Meeting Schedule

*NOTE: All times below are in Eastern Standard Time.

Workgroup MeetingDate and Time
Meeting 1 (Kickoff)

Tuesday, December 1, 2015
3:00pm-4:00pm EST

Meeting 2

Wednesday, December 16, 2015
1:00pm-2:00pm EST

Meeting 3

Wednesday, January 6, 2016
1:00pm-2:00pm EST

Meeting 4

Tuesday, January 19, 2016
1:00pm-2:00pm EST

Meeting 5Wednesday, February 3, 2016
1:00pm-2:00pm EST
Meeting 6Wednesday, February 17, 2016
1:00pm-2:00pm EST
Meeting 7Wednesday, March 2, 2016
1:00pm-2:00pm EST
Meeting 8Wednesday, March 16, 2016
1:00pm-2:00pm EST
Meeting 9Wednesday, March 30, 2016
1:00pm-2:00pm EST
Meeting 10

Wednesday, April 6, 2016
1:00pm-2:00pm EST

 Meeting 11Wednesday, April 20, 2016
1:00pm-2:00pm EST
 Meeting 12Wednesday, April 27, 2016
1:00pm-2:00pm EST



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