A national survey conducted by Harris Interactive found that many Americans believe their personal health information is not adequately protected by the federal privacy rule, state laws, and health-care organizations.

When asked if they agree that “The privacy of personal medical records and health information is not protected well enough today by federal and state laws and organizational practices,” 58 percent said yes (17 percent strongly, 41 percent somewhat). [Emphasis added.]  Dr. Alan F. Westin, professor of public law and government emeritus at Columbia University, concluded that “the HIPAA [Health Insurance Portability and Accountability Act] privacy rule and its enforcement does not seem to have given a national majority much confidence in national health privacy protection,” according to Modern Healthcare.

The poll also found that although most people generally trust health researchers to protect the privacy of their medical records, only 1 percent of respondents would give researchers free use of that information without specific consent.  Following are questions and responses regarding trust and patient consent:

• “Health researchers can generally be trusted to protect the privacy and confidentiality of the medical records and health information they get about research subjects”: 69 percent agree (11 strongly, 58 somewhat); 31 percent disagree (24 somewhat, 7 not at all).

Yet, Americans feel strongly that researchers should first obtain patients’ consent before using their data*:

• Only 1 percent said researchers should be free to use their personal health information without their consent.
• 8 percent would be willing to give general consent in advance to have their personally identified health information used in future research projects without the researchers having to contact them.
• 19 percent said their consent to use their personal health information would not be needed as long as the study never revealed their personal identity and it was supervised by an institutional review board.
• 38 percent responded they would want each research study seeking to use their personally identified health information to first describe the study to them and get their specific consent for such use. [Emphasis added.]
• 13 percent said they would not want the researchers to contact them or to use their personal or health information under any circumstances.
• 20 percent were not sure.

What’s more, some groups were more likely (than the 38 percent above) to say they would want researchers to describe the study to them and get their consent for each use.  For example, some of the groups that were more likely to demand an explanation and consent included:

• Had a “sexual condition”: 49 percent
• Had a genetic test: 48 percent
• Long-term health condition: 45 percent
• Used mental health: 44 percent