Survey Finds Support for Patient Privacy Laws

WASHINGTON—A survey has found that breast cancer researchers largely support legislation to “minimize the risk of exploitation of medical information by commercial sources and otherwise adequately protect patient privacy.” However, they also are concerned about “unbridled privacy laws” that would “delay or discourage scientific progress through quality research.”

The 11-question survey, conducted by the Susan G. Komen Breast Cancer Foundation, was mailed to 1,100 researchers, 214 (19.5%) of whom responded. The researchers could answer the questions with or without additional comments, or they could offer comments on the questions without answering them.

A summary of the survey was distributed at a congressional briefing sponsored by the National Coalition for Cancer Research (NCCR).

Balancing Act

“The survey revealed a somewhat surprising emphasis by researchers on the need for patient protection by way of privacy legislation,” the Komen Foundation summary said. “There was general consensus that federal privacy laws must balance an individual’s right to privacy against the need to understand diseases and the efficacy of treatments across broad populations.”

Among survey respondents, 61.2% said they have used medical data that could identify a patient in their work, but 52% of all respondents said that personally identifiable patient information was not essential to their research.

Those surveyed included clinical, basic, translational, quality-of-life, and epidemiologic researchers; 38% said they have conducted or are currently conducting more than one type of research.

Sixty percent of the respondents were generally familiar with the medical records privacy issue; 30% had some knowledge, and 10% said they had no knowledge.

Asked whether their state had enacted legislation relating to the privacy of patient records, 73% said they were unsure. Almost half (47.2%) had little knowledge of proposed federal patient privacy legislation; 32.7% had some familiarity with bills pending in Congress, and 20.1% were unaware of any proposed new laws.

On the issue of national vs state regulation of patient privacy, 59.8% of the researchers favored broad preemption of state privacy laws by federal legislation. These were generally researchers who have conducted or routinely conduct multistate and multi-institution research, the Foundation said.

Of the 21% of researchers who opposed federal preemption, most expressed concern that more federal involvement would cause researchers inflexible and undue burdens. “This may suggest that if federal privacy legislation was not unduly burdensome, these respondents might be in favor of such legislation,” the Foundation said.