A new examination of patient perspectives on data privacy illustrates unresolved tension over the eroding security and confidentiality of personal health information in a wired society and economy. More than 92 percent 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). 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. Nearly 75 percent of patients expressed concern about protecting the privacy of personal health data, and only 20 percent of patients indicated they knew the scope of companies and individuals with access to their data. The survey found an overwhelming percentage of patients demand accountability, transparency, and control as it relates to health data privacy. More than nine out of ten (94%) patients want companies to be held legally accountable for uses of their health data. A similar majority of patients (93%) want health application (app) developers to be transparent about how their products use and share personal health data. 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 percent of patients want to be able to opt-out of sharing some or all their health data with companies.

• More than 75 percent of patients want to opt-in before a company uses any of their health data.

• More than 75 percent of patients want to receive requests prior to a company using their health data for a new purpose