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On
April 14, 2003, the HIPAA* Privacy Rule went into effect. The rule states
how health plans, providers and health care clearinghouses ("covered
entities") can release protected health information. In order to
obtain data from these sources, you must understand the privacy rule and
what it means. Since covered entities are not required to release data
to researchers, your ability to obtain and use data from these sources
could be shut down without a full understanding of the privacy rule.
AcademyHealth
and the Agency for Healthcare Research and Quality (AHRQ) held two workshops
to educate health services researchers about their responsibilities under
the regulation.
This Web
site contains:
The workshop
addressed crucial questions such as:
- What
meets the legal requirements for personally identifiable health information?
- Does
de-identified information need to be protected?
- What types
of linkages are allowed between data and identifiers?
- What
is the new limited data set researchers will have access to and how
can it be accessed?
- How can
researchers use data while protecting the public?
- What
are the consequences for failing to protect this information?
- What
entities are covered by the regulation and how is their identifiable
data acquired?
Faculty
presentations from the workshops:
- The Covered Entity's Perspective
Mary Durham, Ph.D., Kaiser Permanente, Center for Health Research
PowerPoint® Presentation (131 KB) or PDF Handout 
- The Regulator's Perspective
J. Michael Fitzmaurice, Ph.D., Senior Science Advisor for Information Technology, Agency for Healthcare Research and Quality
PowerPoint® Presentation (307 KB) or PDF Handout
- The Legal Perspective
Jennifer Kulynych, J.D., Ropes & Gray
PowerPoint® Presentation (138 KB) or PDF Handout
- The Institutional Review Board's (IRB's) Perspective
Elizabeth A. Skinner, M.S.W., Associate Scientist, Johns Hopkins Bloomberg School of Public Health
PowerPoint® Presentation (136 KB) or PDF Handout
- The Regulator's Perspective
Carol Stocks, R.N., M.H.S.A., Health Services Administration, Agency for Healthcare Research and Quality
PowerPoint® Presentation (203 KB) or PDF Handout

- The Security Perspective
Elliot Stone, Executive Director and CEO, Massachusetts Health Data Consortium
PowerPoint® Presentation (466 KB) or PDF Handout
*Health Insurance
Portability and Accountability Act of 1996
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