Group advocates online 'do not disclose' list for personal health information

Individual choice and control over personal health information were favored by the majority of Americans participating in an online survey of more than 2,000 adults performed by Patient Privacy Rights and with Zogby International. The survey sought views on privacy, access to health information, and health information technology.

“Americans are not just concerned about corporations snooping in their medicine cabinets, but also about researchers, nosy employees, and people with malicious intent, such as an ex‐spouse or abusive partner,” says Deborah Peel, MD, founder of Patient Privacy Rights.

According to the survey:

• Ninety‐seven percent of respondents said they believe that doctors, hospitals, laboratories, and health technology systems should not be allowed to share or sell their sensitive health information without their consent and that insurance companies should not have access to electronic health records (EHRs) without permission.

• Ninety‐eight percent said they oppose insurance companies sharing or selling health information without consent.

The organization recommends a “one‐stop‐shop” Web site where users can set up consent directives or rules to guide the use and disclosure of all or part of their electronic health information. If a request to use or sell health data is not covered by the individual’s privacy rules, then he or she can be notified via cell phone or emailed for informed consent. The site would include a “Do Not Disclose” list. If a person’s name is on the list, any organization that holds his or her sensitive health information, from prescriptions to DNA, first would have to explain how the information would be used before requesting permission to share it.

Fifty percent of respondents said they would be very likely, and 28% of participants said they would be somewhat likely, to use a Web site that allows each person to decide who can see and use his or her sensitive health information.