Survey Confirms Patients Are Extremely Concerned About Healthcare Data Privacy
Healthcare data breaches are being reported in record numbers with tens of millions of patients having their healthcare data exposed or impermissibly disclosed every year. Healthcare data should remain private and confidential but it is clear that is no longer the case.
The American Medical Association (AMA) recently teamed up with the Savvy Cooperative to explore the perspectives of patients about the privacy of their medical information and conducted a survey on 1,000 adults in the United States to better understand patients’ views on the privacy of healthcare data, with a view to determining how the healthcare industry and the government can help patients and their care teams better protect medical information and strengthen trust.
The survey confirmed that patients are deeply concerned about the lack of security and the inability to ensure their private healthcare data remains confidential. 92% of respondents to the survey believe privacy is a basic right and their health data should not be available for corporations or other individuals to buy. 94% of respondents said companies that collect, store, analyze, or use health data should be held accountable under the law, and almost 93% of patients want health app developers to publicize if and how their product adheres to industry standards for handling health data.
HIPAA applies to healthcare providers, health plans, healthcare clearinghouses, and business associates of those entities, and there are strict rules concerning uses and disclosures of healthcare data; however, the survey confirmed that patients are unclear about the rules that protect their privacy, and they are concerned about who has access to their personal healthcare information. 75% of respondents said they were concerned about protecting the privacy of their health data.
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“The AMA is highly concerned that patients’ private medical information is increasingly vulnerable and digital patient data is being shared beyond the confines of the HIPAA framework without protections of federal privacy,” said AMA President Jack Resneck Jr., MD, especially in light of the U.S. Supreme Court ruling overturning Roe v. Wade. “That medical information was previously being siphoned off and monetized was always a concern. Now, it’s a legal threat as zealous prosecutors can track patients and access their medical records to determine what medical services were provided.”
The survey confirmed that patients are comfortable with their healthcare providers having access to their healthcare data, but patients were least comfortable with social media sites, employers, and big technology companies accessing their healthcare data. 59% of patients were concerned that their health data could be used by companies to discriminate against them or their loved ones or exclude them from opportunities to find housing, gain employment, and receive benefits.
Almost 88% of patients said they think their physicians or hospitals should have the ability to review and verify the security of health apps before those apps gain access to their health data, yet federal regulations prohibit this. Patients also want to have the choice about how their health information is used, with 75% of patients wanting to have the option to opt-in before a company uses any of their health data, and over 75% wanting to receive a request prior to a company using their health data for a new purpose. Almost 80% of respondents said they want to be able to opt-out of sharing some or all of their health data.
The AMA said much more needs to be done to improve transparency on how apps use patient medical information and said it has identified and recommended additional actions to increase transparency on what apps do with medical information. The AMA has also developed a “Privacy by Design” toolkit that health app developers can use to build privacy controls into their apps.
The AMA is calling for all policymakers, in Congress and the administration, to take much-needed action to better protect health information.