Patients Share Preferences About Data Privacy

By Jonathan Springston, Editor, Relias Media

The results of a survey recently conducted by the American Medical Association (AMA) provide more insight on patients’ opinions about protecting their personal health information.

Of 1,000 patients surveyed earlier this year, 92% said they believe privacy is a right and that health data should not be available for purchase. But only 20% of respondents indicated they fully understood exactly who could access such data, to what extent, and for what purpose.

Nearly 60% of respondents worry bad actors could use personal health information against them or their loved ones. Nearly two-thirds of respondents said they were “very” or “extremely” worried certain data could be used as justification for insurance exclusion, employment denial, or for other discrimination.

Thus, patients expect security, transparency, and accountability. Almost all (94%) respondents said those who collect, store, and use these sensitive data should be held accountable by law. Three-quarters of respondents want to either opt out of sharing some or all of their data or want the choice to opt in to such requests.

“Patients trust that physicians are committed to protecting patient privacy — a crucial element for honest health discussions,” said AMA President Jack Resneck, Jr., MD. “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. 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.”

For more on this and related subjects, be sure to read the latest issues of Healthcare Risk Management and Medical Ethics Advisor.