Patients want medical data to stay with physicians, not migrate to big tech

Patients are comfortable with physicians having their medical information, but they also are concerned about protecting the privacy of their health data, according to a new survey.

The American Medical Association (AMA) commissioned the survey of 1,000 patients by Savvy Cooperative, a patient-owned organization that aims to connect patients with health innovators. The study examined patient perspectives on data privacy and how the health care industry and government can protect medical information and strengthen trust.

AMA called on federal lawmakers to take action to protect health information.

“With recent rulings by the Supreme Court, the lack of data privacy raises many questions that could put patients and physicians in legal peril,” the survey summary said.

AMA referred to the June ruling by the U.S. Supreme Court in the case known as Dobbs v. Jackson Women’s Health Organization. The court overturned the landmark 1973 Roe v. Wade case that legalized abortion rights and since then there has been much speculation about the effects of state laws on patients and physicians.

In a separate case, a federal lawsuit filed in California claims Facebook parent company Meta Platforms wrongly tracked patient information of at least 663 hospital systems or medical provider websites “to generate highly profitable targeted advertising on and off Facebook,” according to the complaint filed in June.

“Patients trust that physicians are committed to protecting patient privacy — a crucial element for honest health discussions,” AMA President Jack Resneck Jr., MD, said in a news release. “Many digital health technologies, however, lack even basic privacy safeguards. More must be done by policymakers and developers to protect patients’ health information.

“Most health apps are either unregulated or underregulated, requiring near and long-term policy initiatives and robust enforcement by federal and state regulators,” Resneck said. “Patient confidence in data privacy is undermined as technology companies and data brokers gain access to indelible health data without patient knowledge or consent and share this information with third parties, including law enforcement.”

Results are in

Among the AMA survey findings:

• More than 92% of people believe privacy is a right and their health data should not be available for purchase by corporations or other people.
• Nearly 75% of people are concerned about protecting the privacy of their health data.
• Patients are most comfortable with physicians or hospitals having access to medical data, but are least comfortable with social media sites, employers and big technology companies receiving access to health data.
• 94% of patients state companies that collect, store, analyze or use health data should be accountable by law.
• Almost 93% of patients want health app developers to publicize if and how their products adhere to industry standards for handling health data. “Patients and consumers are demanding transparency,” the survey summary said.
• Current laws prevent health care providers from conducting privacy and security reviews of apps, but almost 88% of patients believe doctors and hospitals should have the ability to review and verify security of health apps before sharing patient data.