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National Health Council Finds Patients Support Simplification of HIPAA Privacy Rule

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June 7, 2012

As a long standing member of the National Health Council (NHC), the AARC has joined other groups and organizations in supporting the premise that a broad range of research should be conducted as expeditiously as possible to bring improvements in health care to patients in all settings.

The HIPAA Privacy Rule, which requires medical researchers to acquire continual re-authorizations from patients to use their medical records in clinical trials, is seen by many as slowing down the progress of clinical research. Many respiratory therapists are doing clinical research, and it is important to hear the implications of the HIPAA rule from the patient and caregiver’s perspective.

The NHC recently conducted nine computer-assisted telephone mini-focus groups aimed at exploring patient and caregiver views on the HIPAA Privacy Rule and its ramifications for medical research. When the impact of the rule was explained to them, most participants saw no need for continual re-authorizations and agreed that that Privacy Rule should be overhauled or eliminated to allow valuable records-based research to take place unimpeded. However, they did emphasize the need to protect their personal information in medical records.

According to the report, “The focus group findings suggest that patients and caregivers will want patient name, Social Security number, and postal and email addresses deleted from records to be used for research. They will also support some kind of simplification of the process for authorizing the use of their medical records for health research.”

The focus groups were supported by a grant from the National Institutes of Health.