Tentative Agenda of the August 23-24, 2007 NCVHS Ad Hoc Workgroup for Secondary Uses of Health Date Hearings

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Tentative Agenda

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

Hubert H. Humprey Building
200 Independence Ave, SW, Room 305A
Washington, DC 20201

	Thursday, August 23 Transcript
	Addressing Trust and Transparency in Health Data Uses
9:00 – 9:15 a.m.	Introductions and Overview	Simon Cohn, M.D., M.P.H.
9:15 – 10:15 a.m.	HIE Experiences	Monica Jones, Programme Manager, the Information Centre for Health and Social Care, UK
10:15 – 10:30 a.m.	Break
10:30 – 11:30 a.m.	Health Data Protection Solutions Needed in HIE	Sean Flynn, Prescription Project Steve Labkoff, Pfizer Mickey Tripathi, Massachusetts eHealth Collaborative Representative, Manatt, Phelps & Phillips, LLP
11:30 - 12:00 p.m.	De-Identification	Latanya Sweeney, Carnegie-Mellon
12:00 – 1:15 p.m.	Lunch
1:15 – 2:45 p.m.	Technical Solutions for Consent and Other HIE	Assaf Halevy, dbMotion Steve Lund or Richard Dick, You Take Control Jonathan White, MD, AHRQ update on Data Stewardship RFI and Value Exchange
2:45 – 3:00 p.m.	Break
3:00 - 4:00 p.m.	Risk Communication and Strategies for Informed Consent/Privacy Notices	Cindy Brach, AHRQ Facilitated discussion of written testimony on risk communication and creating effective informed consent and privacy notices*
4:00 - 4:30 p.m.	Open Microphone
4:30 – 5:30 p.m.	Workgroup Discussion

	Friday, August 24 Transcript
8:30 – 9:45 a.m.	Workgroup Discussion
9:45 – 10:00 a.m.	Break
10:00 – 11:00 a.m.	Health Data Protection Solutions Needed in HIE, Con't.	Tom Penno, HIE Elisabeth Belmont, Maine Medical Center, AHLA (via phone)
11:00 – 12:30 p.m.	Workgroup Discussion

*The following submitted material will be discussed:

Howard Dickler, MD, AAMC, Director for Clinical Research, "Universal Use of Short and Readable Informed Consent Documents: How Do We Get There?", Delivered to the Secretary's Advisory Committee on Human Research Protections on July 31, 2007. [http://www.aamc.org/research/clinicalresearch/hdickler-sachrp07.pdf]
Susan Kleinman, Ph.D., CEO, Kleinman Consulting Group, Evolution of a Prototype Financial Privacy Notice: A Report on the Form Development Project, a report sponsored by eight federal Gramm-Leach-Bliley (GLB) agencies pursuant to section 728 of the Financial Services Regulatory Relief Act of 2006. February 28, 2006. [http://www.ftc.gov/privacyinitiatives/ftcfinalreport060228pdf]
Peter M. Sandman, Ph.D., Risk Communication Consultant, Personal Message. {See http://www.psandman.com/]

August 22, 2007