The majority of patients demand accountability and transparency

What you should know:

– A new examination of patient perspectives on health data privacy illustrates the unresolved tensions regarding the erosion of security and privacy of personal health information in a hard-wired society and economy.

– More than 92% of patients believe that privacy is a right and that their health data should not be available for purchase, according to a survey published by the American Medical Association (AMA).

Confidentiality and accessibility of health information

The survey of 1,000 patients was conducted by Savvy Cooperative, a patient-owned healthcare information source, in early 2022 and revealed data privacy concerns and confusion about who can access personal health information.

Other key findings of the report include:

– Nearly 75% of patients expressed concern about protecting the privacy of personal health data, and only 20% of patients indicated that they were aware of the scope of companies and individuals with access to their data. This concern is amplified by the United States Supreme Court’s decision in Dobbs v. Jackson Women’s Health Organization because the lack of data privacy could put patients and doctors at legal risk in states that restrict reproductive health services.

– Patients are more comfortable with doctors and hospitals having access to personal health data, and less 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 when it comes to the privacy of health data. To prevent unwanted access and use of personal health data, patients want to control what companies have collected about them and how it is used:

– Nearly 80% of patients want to be able to refuse to share all or part of their health data with companies.

– More than 75% of patients want to register before a company uses their health data.

– More than 75% of patients want to receive requests before a company uses their health data for a new purpose

– Patients are concerned about the repercussions of having little or no control over the use and sharing of personal health data that companies have collected. About three in five patients (59%) expressed concern about personal health data being used against them or their loved ones. Nearly nine in ten patients (88%) believe their doctor or hospital should be given the opportunity to review and verify the security of health apps before those apps have access to their health data.

Strong regulations are needed to support patients’ right to data privacy and restore trust in the sharing of data that facilitates accessible, equitable and personalized care. Patients should have meaningful control and a clear understanding of how their data is used and with whom it is shared. As Congress continues discussions on federal privacy legislation, seeks to ensure that the resulting privacy law protects the sacred trust at the heart of the doctor-patient relationship.

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