About the Program on Information Technology, Health Records & Privacy

We see the re-shaping of the nation’s health care system through advanced technology applications as one of the most important developments of the next two decades.

The Program was formed by our Center for Social and Legal Research (which was itself created as a non-profit think tank in 1985 to explore technology-society relationships) and is administered by Privacy & American Business.

Program Activities:

  • Conduct Continuing Public Opinion Surveys of the public and various leadership groups, with Harris Interactive as our privacy partner.
  • Conduct Empirical Case Studies of the privacy experiences in emerging health information technology experiments and programs.
  • Develop Legal and Policy Analyses of the privacy, confidentiality, subject access, and due process aspects of a national or decentralized-model EMR system.
  • Track the privacy rules and experiences in EMR projects of other democratic nations.
  • Publish White Papers and Reports, and a Quarterly Electronic Newsletter.
  • Organize Seminars and Conferences on Program Themes.

 

Free Program Downloads

WHITE PAPER:
Building Privacy by Design in Health Data Systems, co-authored by Dr. Alan Westin and the Program’s Associate Director, Vivian van Gelder.

  • Download the September 2005 paper here. [PDF]

BIBLIOGRAPHY:
 Selected Bibliography on Patients’ Access to Their Medical Records, 1996 - 2006, by Dr. Alan Westin presented at the IBM/THINK Forum.

  • Download the March 2006 bibliography here. [DOC]

TESTIMONY:
Dr. Alan Westin testified before HHS’s National Committee on Vital and Health Statistics Subcommittee on Privacy and Confidentiality at the Hearings on Privacy and Health Information Technology.

  • Download his February 23, 2005 testimony on “How the Public Views Health Care, Privacy and Information Technology Applications.” [PDF]
  • Download his PowerPoint Presentation.

“Public Attitudes Toward Privacy in HIPAA and HIT Programs,” presented at the Second HIT Summit, Washington, DC, September 8, 2005.

SURVEY:
As one of the first activities of P&AB’s Program on Information Technology, Health Records & Privacy, Dr. Alan Westin directed a national survey, “How the Public Sees Health Records and an EMR System.”

  • Download the Topline Results.[PDF]
  • Download “Public Attitudes Toward Electronic Health Records” [PDF]

HEALTH SURVEYS REPORT:
The Program’s first publication, “How the Public Views Health Privacy: Survey Findings from 1978 to 2005,” summarizes 14 published national studies dealing in whole or in major parts with issues of health information privacy.

  • Download the Health Surveys Report, “How the Public Views Health Privacy: Survey Findings from 1978 to 2005.” [PDF]

Find out about the Program Staff.

Read the Press Release, “U.S. Public Sharply Divided on Privacy Risks of Electronic Medical Records”

Contact Us for more information about this Program.