Poll: Huge majorities want control over health info

By Mike Miliard
10:52 AM

Patient Privacy Rights, the health privacy watchdog, has enlisted the help of Zogby International to conduct an online survey of more than 2,000 adults to identify their views on privacy, access to health information, and healthcare IT. The results were overwhelmingly in favor of individual choice and control over personal health information.

Ninety-seven percent of Americans believe that doctors, hospitals, labs and health technology systems should not be allowed to share or sell their sensitive health information without consent.

The poll also found strong opposition to insurance companies gaining access to <a href="/directory/electronic-health-record-ehr" target="_blank" class="directory-item-link"><a href="/directory/electronic-health-record-ehr" target="_blank" class="directory-item-link">electronic health records without permission. Ninety-eight percent of respondents opposed payers sharing or selling health information without consent.

"No matter how you look at it, Americans want to control their own private health information," said Deborah Peel, MD, founder of Patient Privacy Rights. "We asked the question, 'If you have health records in electronic systems, do YOU want to decide which companies and government agencies can see and use your sensitive data?' Ninety-three percent said 'Yes!'"

Ninety-one percent of Americans want to be able to decide which individual people can see and use their health information, according to the poll – which indicated that Americans are concerned not just about corporations intruding on their data, but also researchers, employees, and people with malicious intent, such as ex-spouses or abusive partners.

Patient Privacy Rights advocates for a patient-centered healthcare system, where each person controls the use of personal health data and healthcare systems put patients first. The group asserts that the most important element in a patient-centered healthcare system is an inexpensive, practical and effective method to ensure individuals can control and selectively share personal health information scattered across many locations, from doctors' offices, pharmacies, labs  and insurance companies to hospitals with those they choose.

The group advocates a 'one-stop shop' website where consumers 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 privacy rules, they can be 'pinged' via cell phone or e-mailed for informed consent.

Patient Privacy Rights calls this solution the "Do Not Disclose" list – similar to the national "Do Not Call" list. If a patient's name is on the list, any organization that holds his or her sensitive health information, from prescriptions to DNA, must first explain how that information will be used before being granted permission.

A large majority of people surveyed, 78 percent, said they would be somewhat likely (28 percent) or very likely (50 percent) to use a website that allows them to decide who can see and use his or her sensitive health information.

For more information on the "Do Not Disclose" list and petition, visit patientprivacyrights.org/do-not-disclose.

"Americans overwhelmingly believe that they are the only people in the right position to make decisions about how their information can be used," said Peel. "Researchers do not get a free pass."

Only 5 percent of those surveyed said the government should make the decision on whether corporations and researchers can see and use the information in health records without permission. Moreover, most individuals don't trust their doctors to make decisions for them. Just 5 percent believe their physician or other health professional should have that power. When asked who should have that power, 87 percent of respondents said, "you personally."

Patient Privacy Rights urged policymakers and Congress to "think long and hard about Americans' strong, indisputable beliefs about their right to privacy, especially as they decide policies and funding for the nation's health systems."