Health Insurance Portability and Accountability Act (HIPAA)

ACE to testify about impact on epidemiology

Dear Colleagues:

Please take a moment to read the message below from David Korn at AAMC.

We (ACE) also are testifying 11/20/2003 but will focus our testimony on the impact of HIPAA on epidemiology. We are working closely with the AAMC and would like to draw epidemiology examples from their survey database.

If you have had a major problem with HIPAA, please submit your story to the AAMC (as described below). Your examples will help our cause and build the case that we'll present at the upcoming hearing.

Thank you for your assistance with this important issue.

Sincerely,

Carlos Camargo (President, ACE)

Robert Hiatt (Chair, HIPAA Subcommittee)

Martha Linet (President-Elect, ACE)

Brian Strom (Chair, Policy Committee)

Date: Fri, 24 Oct 2003

Subject: HIPAA Project

Dear Steering Committee Member:

As a member of the Steering Committee for the AAMC Project to Monitor and Document the Effects of HIPAA on Research, you were most helpful as we developed and launched the survey. I write now to call on you for additional help.

Our response rate to the survey to date has been disappointing. Though virtually every survey respondent has supplied compelling anecdotes about his or her experiences with HIPAA's impact on research, we have received a relatively few (11X) completed surveys, well below our expectations when we launched the project. Moreover, it appears that there has been little response from the communities represented by our collaborating organizations. It is critically important to our ability effectively to use the database to assist in the development of policy recommendations that we build a broad, credible database of case reports that reflects the impact of HIPAA on the various disciplines of biomedical, health services, and epidemiologic research. Because a robust response rate to the survey is essential, we seek your help in encouraging your colleagues to respond to the survey as soon as possible. As you know, we seek responses from investigators, IRB members, privacy officials, research administrators, deans and others involved in the conduct or oversight of research.

The survey website is http://services.aamc.org/easurvey

Please direct any questions to my new colleague in this effort, Susan Ehringhaus, at (202) 828-0543 or at sehringhaus@aamc.org. We hope to be able to present preliminary results of the survey to the National Committee on Vital and Health Statistics, the body statutorily constituted to advise the Secretary, DHHS on medical information privacy policy, at its meeting in late November, so this request for representative, timely responses is particularly urgent. Thank you for all your help in supporting this important project.

Sincerely,

David Korn, M.D.

Senior Vice President,

Biomedical and Health Sciences Research