A handful of recent rulings from the Supreme Court have brought the issue of patient privacy into the spotlight, and patients are more concerned about the privacy of their medical information, including a lack of security and confidentiality, according to a recent survey from the American Medical Association (AMA).
In fact, the Supreme Court’s recent decisions mean the lack of data privacy raises many questions that could put patients and physicians in legal peril, the AMA stated. AMA teamed up with Savvy Cooperative to conduct the survey, which queried 1,000 patients across the U.S. on their perspectives toward medical information privacy.
Among the findings, 92% of respondents said they believe privacy is a right and their health data should not be available for purchase by corporations or other individuals. However, most people are unclear about privacy laws around their health data and who has access to their data. Additionally, nearly 75% are concerned about protecting the privacy of their health data.
AMA is also concerned that health data is increasingly vulnerable and that digital health data is being shared beyond what is allowed under the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Respondents were most uncomfortable with their health data being shared with social media sites (71.2%), big tech (67.4%) and prospective employers (62.9%).
Regulations Needed
According to the AMA, strong regulations are needed for an individual’s right to control, access and delete personal data collected about them. The Supreme Court’s June decision to overturn Roe v. Wade, which guaranteed access to abortion care for nearly 50 years in the United States, also set off a huge privacy issue in healthcare. The move allowed states to restrict, outlaw or ban abortions, and therefore challenge the right to privacy by potentially enabling law enforcement to gain access to health data related to abortion care and pregnancy. In 1973, the Supreme Court ruled in Roe that abortion care fell under the protection of right for individual privacy and due process under the 14th Amendment.
Now that this precedence has been overturned, AMA is calling on policymakers to enact strong regulations around health data privacy. The AMA outlined five privacy principles for a national privacy framework, including:
- Individual rights
- Equity
- Entity responsibility
- Applicability
- Enforcement
“As health information is shared—particularly outside of the healthcare system—patients must have meaningful control and a clear understanding of how their data is being used and with whom it is being shared,” the AMA said in the survey. “Above all, patients must feel confident that their health information will remain private. Preserving patient trust is critical.”
The AMA also believes that stronger regulations will build public trust rather than inhibit data exchange. Survey respondents also want more regulations, as well as transparency. For example, nearly all patients (94%) stated that companies that collect, store, analyze or use health data should be held accountable by the law. As more health data apps become available, many are worried about their data privacy; nearly 70% of surveyed patients hesitate at least sometimes when it comes to using health apps, and more than 60% decide not to start using the tool over privacy concerns.
In addition, almost 93% of patients want health app developers to publicize if and how their product adheres to industry standards for handling health data. Plus, people want choices about their health data when using apps––nearly 80% say they want to opt-out of sharing some or all their health data; more than 75% want to opt-in before their data is shared; and more than 75% want to receive requests prior to a company using their health data for a new purpose.
One of the biggest concerns among survey respondents was the repercussions of their health data being shared.
“Over one-half of surveyed patients stated they are very or extremely concerned about negative repercussions related to insurance coverage, employment or opportunities for healthcare resulting from access to their health data,” the survey found.
Therefore, privacy protection efforts also need to consider non-discrimination protections to avoid creating or exacerbating inequities.
“Patients trust that physicians are committed to protecting patient privacy - a crucial element for honest health discussions,” AMA President Jack Resneck Jr., MD said in a statement. “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. Patient confidence in data privacy is undermined as technology companies and data brokers gain access to indelible health data without patient knowledge or consent and share this information with third parties, including law enforcement.”
Amy joined TriMed Media as a Senior Writer for HealthExec after covering home care for three years. When not writing about all things healthcare, she fulfills her lifelong dream of becoming a pirate by sailing in regattas and enjoying rum. Fun fact: she sailed 333 miles across Lake Michigan in the Chicago Yacht Club "Race to Mackinac."