Does the Federal HIPAA Privacy Rule Go Too Far?


WASHINGTON, June 7, 2012 /PRNewswire via COMTEX/ -- Patients Concerned about the Privacy Rule's Impact on Research

People with chronic conditions and their family caregivers were surprised, disappointed, and angry to learn that federal privacy laws are inhibiting medical research that could lead to new treatments and cures. The National Health Council (NHC) today released the results of its focus group study on patient understanding of the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule.

"The HIPAA Privacy Rule is necessary to protect sensitive personal medical information," said Myrl Weinberg, NHC President. "However, the rule sets burdensome requirements that can delay essential research and do little to nothing to protect the security or privacy of patient records."

The Privacy Rule defines and limits the circumstances where protected health information may be used or disclosed. However, after learning about how their personal health records can and cannot be used under the Privacy Rule, people who participated in the NHC focus groups unanimously agreed that the regulation needs to be changed in order to promote medical research.

"Adding insult to injury, patients were shocked to learn that while a detailed authorization process must be followed before their medical records may be used in records-based research, no authorization is required if their records are used by the provider or care facility for their own marketing purposes," explained Weinberg. "The first step is to bring this complex problem to the attention of the patient community," she added, "and then stakeholders - including patients - need to reach a consensus on how to address it."

To read the report findings and methodology, go to .

Additional Resources

Institute of Medicine, Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research.

Department of Health and Human Services Office for Civil Rights, HIPAA and Marketing.

Department of Health and Human Services Office for Civil Rights, HIPAA and Research.

National Health Council -

This project was made possible with support from the National Institutes of Health and the Indiana University Center for Law, Ethics, and Applied Research in Health Information. (RC1 CA146501-01) Any opinions, findings, conclusions, or recommendations in this report do not necessarily reflect the views of the organizations or agencies that provided support for this project.

The National Health Council (NHC) is the only organization of its kind that brings together all segments of the health community to provide a united voice for the more than 133 million people with chronic diseases and disabilities and their family caregivers.