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Report: HIPAA privacy rule negatively affects research

HIPAA Weekly Advisor, February 2, 2009

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HIPAA’s privacy rule should be revised because it creates barriers to health research and hinders scientific advancements in the United States, according to a new report, The HIPAA Privacy Rule: Lacks Patient Benefit, Impedes Research Growth, published by the Association of Academic Health Centers (AAHC).

The privacy rule impedes important research, according to the report, in areas such as:

• Research requiring access to stored tissues
• Genetic data sets
• Patients registries
• Data warehouses
• Medical records

“The negative impact of the HIPAA Privacy Rule on research ultimately translates into negative consequences for patients, with more terminally ill patients missing out on the opportunity to participate in clinical trials that have the potential to save their lives,” the AAHC wrote in the report. “To remedy this threat to research and the American people, revision of the HIPAA Privacy Rule is imperative.”

Some important numbers from the report include:

• 59.1%—percentage of respondents who said the privacy rule has a negative or strongly negative effect on research at their institution
• 63.6%—percentage of respondents who said the pace of their research was impacted negatively or strongly negatively
• 70.8%—percentage of respondents who characterized the impact on the costs of research as negative or strongly negative

Read the full report by the AAHC.

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