Tentative Agenda


Ad Hoc Workgroup for Secondary Uses of Health Data

August 23 – 24, 2007

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

Printable Acrobat Agenda

Thursday, August 23


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


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