Survey reveals public's widespread mistrust of how health data are used

Key takeaways:

• 75% of patients surveyed said they were concerned about the privacy of their health data.
• Despite widespread concern about their health data, patients were the most comfortable with their physician’s office and hospitals having access to their data.
• 80% of patients reported that they did not know “the scope of companies and individuals” who had access to their data.

Recent survey results released by the AMA showed that many patients are concerned about privacy protections regarding their personal health data, and nearly all agreed that it should be private and unavailable for purchase.

Specifically, 75% of 1,000 patients who participated in the survey said they were concerned about privacy protection, according to a press release from the AMA, and more than 92% believed privacy is a right that should extend to health data.

Despite those numbers, 80% of patients reported that they did not know “the scope of companies and individuals” who had access to their data, according to the release.

In response to the results, the AMA called for strong regulations to “support patients’ right to data privacy and restore trust in data exchange that facilitates accessible, equitable, and personalized care.”

“Patients must have meaningful control and a clear understanding of how their data is being used and with whom it is being shared,” the release said.

Patients were especially concerned about the idea that their health data could be used against them — particularly those in underrepresented communities, according to the AMA. About two-thirds of transgender patients said they were “extremely concerned their health data could negatively impact their employment status,” the AMA wrote, and more than 50% of Hispanic/Latinx and American Indian or Alaskan Natives were “highly concerned about obtaining or keeping insurance.”

However, a silver lining of the survey report was that patients were the most comfortable with their physician’s office and hospitals having access to their data.

“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 the release.

Alternatively, patients were least comfortable with technology companies, social media sites and employers having access to that same data.

“Many digital health technologies ... 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.

In fact, according to the report, 93% of patients want health apps to be transparent about data and 94% want companies that collect or use health data to be held legally responsible. Additionally, about 80% want the ability to opt out of sharing data with companies and 88% believe that their provider should be able to assess a health app’s security before those apps can gain access to health data.

“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,” Resneck said in the release.

Ultimately, the AMA’s stance is that “as health information is shared — particularly outside of the health care system — patients must have meaningful control and a clear understanding of how their data is being used and with whom it is being shared.”

“Above all, patients must feel confident that their health information will remain private,” the AMA wrote. “Preserving patient trust is critical.”

References:

• Patient perspectives around data privacy. https://www.ama-assn.org/system/files/ama-patient-data-privacy-survey-results.pdf. Accessed Aug. 8, 2022.
• Patient survey shows unresolved tension over health data privacy. https://www.ama-assn.org/press-center/press-releases/patient-survey-shows-unresolved-tension-over-health-data-privacy. Published July 25, 2022. Accessed Aug. 8, 2022.