What You Should Know:
– A new examination of patient perspectives on health data privacy illustrates unresolved tension over the eroding security and confidentiality of personal health information in a wired society and economy.
– More than 92% of patients believe privacy is a right and their health data should not be available for purchase, according to a survey released by the American Medical Association (AMA).
Privacy and Health Information Accessibility
The survey of 1,000 patients was conducted by Savvy Cooperative, a patient-owned source of health care insights, at the beginning of 2022 and found concern over data privacy protections and confusion regarding who can access personal health information.
Other key findings from the report include:
– Nearly 75% of patients expressed concern about protecting the privacy of personal health data, and only 20% of patients indicated they knew the scope of companies and individuals with access to their data. This concern is magnified with the U.S. Supreme Court ruling in Dobbs v. Jackson Women’s Health Organization as the lack of data privacy could place patients and physicians in legal peril in states that restrict reproductive health services.
– Patients are most comfortable with physicians and hospitals having access to personal health data, and least comfortable with social media sites, employers and technology companies having access to the same data.
– An overwhelming percentage of patients demand accountability, transparency, and control as it relates to health data privacy. To prevent unwanted access and use of personal health data, patients want control over what companies collected about them and how it is used:
– Almost 80% of patients want to be able to opt-out of sharing some or all their health data with companies.
– More than 75% of patients want to opt-in before a company uses any of their health data.
– More than 75% of patients want to receive requests prior to a company using their health data for a new purpose
– Patients worry about the repercussions of little or no control over the use and sharing of personal health data that companies have collected. About three out of five patients (59%) expressed concern with personal health data being used against them or their loved ones. Nearly nine out of ten (88%) patients believe that their doctor or hospital should have the ability to review and verify the security of health apps before those apps gain access to their health data.
Strong regulations are needed 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. As Congress continues discussions around federal privacy legislation, the https://www.ama-assn.org/AMA seeks to ensure that resulting privacy law protects the sacred trust at the heart of the physician-patient relationship.