Transparency and data are essential to the evolution of health care. A recent review of patient perspectives on data privacy shows continued uncertainty over the eroding security and confidentiality of Personal Health Information (PHI) in an everchanging connected world. A 1,000-patient survey recently released by the American Medical Association (AMA) and conducted by Savvy Cooperative found worry over data privacy protections and confusion about who can access PHI. To summarize the survey’s outcomes in one sentence, patients are deeply concerned over the lack of security and confidentiality of personal health information. 

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Patient Data Privacy – Privacy is a Right!

Digital health tools that facilitate innovative methods to improve care, enable lifestyle change, and create efficiencies are progressing quickly. And as patients (consumers) continue to adopt digital tools, healthcare organizations are rapidly leveraging these technologies to improve care and the patient experience. While digital health products offer many benefits, they also bring concerns about health information privacy and security. Patients worry about the repercussions of having little or no control over using and sharing personal health data. The AMA survey found that more than 92% of patients believe privacy is a right and that their health data should not be available for purchase.

Like many other aspects of our daily life, digital health information also makes us—and our personal information—vulnerable to data breaches. Concerns for data security and privacy goes beyond recent large-scale US cyberattacks. The frequency and severity of attacks affecting the number of individuals and costs to healthcare companies have increased over the past five years. According to data from the US Department of Health and Human Services, there were 713 known breaches affecting approximately 45.7 million individuals in 2021, an increase from 329 breaches affecting 16.7 million individuals in 2016. 

Based on the survey results, the AMA discovered that by understanding the patient perspective on data privacy, the industry and government could better act to help patients and their care teams protect medical information and strengthen trust. As highlighted in the image below, patients are most comfortable with their physician or hospital accessing their data. They are least comfortable with social media sites, employers, and big technology companies accessing their health data. 

Patient Data Privacy – The Need for Strong Regulations

The digital health industry is exhibiting signs of maturity as it moves from a field of aspiring early-stage start-ups to more stable companies with validated products. With more validated products in the market, there is a growing need for stronger regulations to support patients’ right to control, access, and delete personal data. The AMA survey found that an overwhelming percentage of patients demand accountability, transparency, and control regarding health data privacy, with 94% expecting companies to be held legally accountable for using health data. Strong regulations are needed to restore trust in data exchange that facilitates accessible, equitable, and personalized care. Patients must have meaningful control and a clear understanding of how data is used and shared. 

As highlighted in a Health Exec article by Innovate Healthcare, the AMA proposes strong regulations for individuals’ right to control, access, and delete personal data collected. 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 vast 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 the right to individual privacy and due process under the 14th Amendment. 

The AMA calls on policymakers to enact strong regulations around health data privacy. The AMA outlined five privacy principles for a national privacy framework.

The AMA advocates for near-term app transparency requirements, including app privacy attestations collected by EHRs that will increase transparency and bolster individuals’ choice of apps. While the American authorities discuss federal privacy legislation, the AMA seeks to ensure that the resulting privacy law protects the physician-patient relationship. The AMA has also developed a guide to help app developers build privacy-forward technologies.

Impact on Health Equity

59% of survey respondents worry about health data companies use to discriminate against them or their loved ones or exclude them from opportunities to find housing, gain employment and receive benefits. Privacy efforts must include non-discrimination protections to avoid exacerbating existing inequities or creating new ones. Patients must trust that the information captured using digital health tools will not be used against them. 

How can you keep your personal health information safe? If you’re wondering how to protect healthcare data, the first step is simply being aware. The National Council on Aging has an informative article for patients that might not understand the sometimes confusing terminology used in the digital health space. 

Ultimately, digital health cannot exist without surrendering a part of our privacy. The advanced technologies driving the transformation cannot improve without our data. And without data, they can’t be implemented as a standard of care in medicine.

About the American Medical Association

The American Medical Association is the physicians’ powerful ally in patient care. As the only medical association that convenes 190+ state and specialty medical societies and other critical stakeholders, the AMA represents physicians with a unified voice to all key players in health care. The AMA leverages its strength by removing the obstacles that interfere with patient care, leading the charge to prevent chronic disease and confront public health crises, and driving the future of medicine to tackle the biggest challenges in health care.

By Logan Harper, MS

Keywords: Digital Transformation, HealthTech, Privacy