Patients are incredibly concerned about healthcare data privacy, and rightly so. Healthcare data breaches have hit record numbers, and according to the U.S. government, in the last five months of 2022, breaches have almost doubled from the same period previous year. With nearly 20 million victims of data theft in the first half of the year, it is no wonder patients are worried about the lack of privacy.
In an effort to better understand patients’ views on privacy and health data, the American Medical Association (AMA) conducted a survey and released results confirming that patients are extremely concerned about the lack of privacy and ability to ensure personal health data remains confidential.
In fact, 92% of respondents believe privacy is a fundamental right, and their personal health information should not be available for corporations or other individuals to buy. While 75% of individuals expressed concerns about protecting the privacy of their health data, most patients said they were comfortable with their physician or hospital having access to their data. What was telling was that patients were least comfortable with employers, big technology companies, and social media sites having access to their personal health information. More than half stated they were extremely concerned about negative repercussions relating to insurance coverage, employment or opportunities for healthcare resulting from access to their health data.
Furthermore, patients said they wanted to have choices about how their personal health information is used. For example, 80% stated they wanted to be able to opt-out of sharing some or all of their health data, and 75% would prefer to receive requests before a company uses their health data for a new purpose.
The AMA stated that it believes stronger regulation is needed to support patients’ rights to control, access and delete personal data collected about them. Privacy efforts should also include non-discrimination protections in order to avoid exacerbating existing inequities or creating new ones. The AMA said it will continue to advocate for better transparency requirements and stronger regulations that support patient rights to data privacy and restore trust in data exchange. They are calling on policymakers in Congress and the administration to take much-needed action to better protect health information.
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