What’s the news: Over 92 percent of patients surveyed by the American Medical Association (AMA) emphasized that privacy is a right and that health data should not be available for purchase.
Savvy Cooperative, a patient-owned source of health care insights, examined perspectives of 1,000 patients on data privacy and released the results on July 25. It found ‘unresolved tension’ among patients over the “eroding security and confidentiality of personal health information in a wired society and economy.”
Why it matters: Health data is highly sensitive, especially when accessed by third parties. Concerns over access, control, consent, monetisation, and surveillance in context of health data found in the survey have been raised many times before. Such data may be utilized by health insurance companies, and provide granular insights into individuals’ personal lives. Further, the US Supreme Court’s decision on overturning Roe vs. Wade highlighted how this data may be used for tracking, surveillance, and criminal investigations against women seeking information or resources on abortion.
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Who do respondents trust with their health data?: As per the survey, patients said they are most comfortable with physicians and hospitals having access to personal health data. For example, 75.2 percent said they are comfortable with their doctor’s office using the data while 64.2 percent said they are comfortable with hospitals or health systems using this information.
In fact, patients said they want their physicians and hospitals to have the technology and capability to review apps for privacy and security protections. Nearly nine out of 10 (88 percent) patients said doctors or hospitals should have the ability to review and verify the security of health apps prior to data access. However, federal regulations prevent providers and electronic health record (EHR) systems from conducting such reviews of apps.
Meanwhile, surveyed patients said they are least comfortable with social media sites (71.2 percent), employers (62.9 percent) and technology companies (67.4 percent) having access to their data.
“Patients trust that physicians are committed to protecting patient privacy—a crucial element for honest health discussions. 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,” said Jack Resneck Jr., M.D. and AMA President.
Who can access health data? The survey, conducted in the beginning of 2022, said people were confused about who can access their personal health information. Nearly 75 percent of patients expressed concern about protecting their personal health data but only 20 percent of patients indicated they knew the extent to which companies and individuals can access 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,” said AMA.
Resneck warned that patient confidence in data privacy is undermined when technology companies and data brokers access health data without patient consent and share the same with third parties, including law enforcement.
Demand for accountability: An overwhelming number of patients demanded accountability, transparency, and control for health data privacy. More than nine out of 10 (94 percent) patients wanted companies to be held legally accountable for using health data. 93 percent of patients demanded transparency from health app developers as to how their products use and share personal health data.
Control over company access: Almost 80 percent of patients said they want to be able to ‘opt-out’ of sharing their health data with companies. More than 75 percent of patients wanted an option to ‘opt-in’ before a company uses any of their data. While over 75 percent of patients want to receive requests prior to a company using their personal data for a new purpose.
Impact on health equity: Patients worried about the repercussions of little or no control over the use and sharing of personal health data by companies. About three out of five patients (59 percent) feared that the data will be used against them or their loved ones. Most patients said they are “very” or “extremely” concerned about discriminatory uses of health data to exclude them from insurance coverage (64 percent), employment (56 percent) or opportunities for health care (59 percent).
“More than half of Hispanic/Latinx and American Indian or Alaskan Natives stated they are “highly” concerned about discriminatory uses of personal health data and two-thirds (66 percent) of transgender individuals stated they are “extremely” concerned,” said the AMA.
Need for strong regulations: The survey said that strong regulations will support patients’ right to data privacy and restore trust in data exchange that facilitates accessible, equitable, and personalized care. For this, patients must have meaningful control and a clear understanding of how and with whom their data is being used.
The AMA advocates for near-term app transparency requirements, including app privacy attestations collected by EHRs, that will increase transparency and bolster individuals’ choice in which apps to use. While the American authorities discuss federal privacy legislation, the AMA seeks to ensure that the resulting privacy law protects physician-patient relationship. The AMA has also developed a guide to help app developers build privacy-forward technologies.
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