- A majority of people are unclear about what rules exist to protect the privacy of their medical information and have concerns about who has access, according to a new survey from the American Medical Association.
- Nearly 75% of patients expressed concern about protecting their personal health data, and only 20% said they knew the scope of companies and people with access to their medical information, the survey found. More than 92% of patients said they have a right to privacy, and their health data should not be available for purchase.
- The AMA said it is highly concerned that digital patient data is being shared beyond the confines of the HIPAA framework, making private medical information increasingly vulnerable. The group said it is calling on Congress and the Biden administration to do more to protect health information.
The Supreme Court decision last month overturning Roe v. Wade has renewed calls for expanded federal data privacy protections.
In the wake of the court's ruling, 72 Democratic members of Congress sent a letter to the chair of the Federal Trade Commission urging new safeguards against data brokers collecting and selling data that could be used to prosecute pregnancy-related crimes. Another letter from Democrats in the Senate asked the HHS to update the HIPAA privacy law to limit when information about abortion services can be shared.
The House Oversight Committee has launched an investigation into how companies are handling sensitive health data. The HHS, for its part, issued guidance saying providers are not allowed under HIPAA to disclose patient information unless faced with a court order.
The AMA said lack of data privacy could place patients and physicians in legal peril in states that restrict reproductive health services in the wake of the Supreme Court's ruling in Dobbs v. Jackson Women’s Health Organization.
The survey of 1,000 patients, conducted by patient-owned Savvy Cooperative, at the beginning of 2022, found 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 data.
The medical group said most health apps are under-regulated, requiring near- and long-term policy initiatives and robust enforcement by federal and state regulators. A majority of patients (93%) want health app developers to be transparent about how their products use personal health data.
Almost 80% of patients want to be able to opt out of sharing some or all their health data with companies, and 75% want to opt in before a company uses any of their health data.
About three out of five patients expressed concern with personal health data being used against them or their loved ones. Most patients stated they are “very” or “extremely” concerned about discriminatory uses of personal health data to exclude them from insurance coverage, employment or opportunities for healthcare.