The U.S. health data privacy debate. Will there be comprehension before closure?

Area of Science:

• Health Informatics
• Public Policy
• Information Privacy

Background:

• Decades of debate surround personal health data privacy.
• Upcoming legislation in August 1999 by U.S. Congress addresses health information privacy.
• Implementation of a 1996 law mandates unique identifiers and uniform electronic data sets for U.S. medical transactions.

Purpose of the Study:

• To clarify policy debates surrounding automated personal health data.
• To provide a framework for assessing the impact of electronic health data.
• To understand the U.S. policy process for health information privacy legislation.

Main Methods:

• A three-step analytic scheme is proposed.
• Step 1: Precisely describe personal health data transactions.
• Step 2: Analyze transactions based on primary beneficiaries.
• Step 3: Characterize Congressional perception and options.

Main Results:

• The analytic scheme provides a clear description of health data transactions.
• Identifying beneficiaries clarifies points of disagreement in the policy debate.
• Understanding Congressional considerations aids in assessing legislative outcomes.

Conclusions:

• The proposed analytic scheme clarifies complex health data privacy issues.
• Understanding transaction beneficiaries and policy processes is crucial for effective legislation.
• This framework aids in assessing the results of evolving information technologies and privacy rules.