Study uncovers patients’ concerns with health data security and third-party access to health data for non-treatment purposes

Health Gorilla, a leading Health Information Network and interoperability provider, released its State of Patient Privacy report to uncover the patient perspective on national health information sharing in light of broadened access to medical record data and recent momentum for interoperability at the federal level. The study found that patients are uncomfortable sharing their health data for many emerging use cases, and patients are concerned about Big Tech’s role in storing health information.

As more healthcare organizations participate in national interoperability, the cost, complexity, and technical burden of accessing comprehensive health data has fallen significantly. Providers, payers, pharmacies, and many other entities rely on a seamless exchange of patient information to treat and manage their populations in a data-driven, cost-efficient manner. While substantial progress has been made in the private and public sectors, patients’ potential concerns have not been well understood in industry circles.

The State of Patient Privacy report surveyed 1,213 patients in the United States who received medical care between May 2022 and May 2023. The goals of the report were to understand consumer attitudes towards broader medical record interoperability, uncover potential concerns with data sharing, and gather perspectives on non-treatment-related use cases for data access.

Among the findings:

• A majority of patients (71%) said they are comfortable with providers accessing their data without their explicit consent when required for treatment, but less so for payment-related purposes(39%), operations-related purposes (28%), and public health purposes (23%).
• 95% of patients expressed concern about the possibility of data breaches affecting their medical records.
• 65% of patients expressed distrust of Big Tech companies storing their health data.
• 54% of patients said they are worried about security and privacy protections offered by vendors that handle their health data.
• 60% of patients reported feeling more confident in health data exchange facilitated by government approved entities.

“In this broadly representative sample of the U.S. population, most people feel that it is easy to access their medical records, that they find the information they receive to be understandable, and believe that accessing this data is important to them for many reasons,” said Dr. Steven Lane, Chief Medical Officer at Health Gorilla. “At the same time, there is a significant degree of concern regarding the sharing of medical information without explicit consent, even with providers and payers involved in their care. While most feel that their health data is safe and secure, there are significant concerns regarding the possibility of future data breaches, with general agreement that government certification of health data exchange raises the level of confidence in data exchange.”

“The results of this privacy report indicate the urgent need to build trust with patients. As we make progress in setting a universal floor for interoperability, patients must have confidence in the system for healthcare interoperability to work,” added Steve Yaskin, Co-Founder and Chief Executive Officer at Health Gorilla. “The majority of patients don’t believe that vendors are doing enough to protect their health data and have serious concerns about a potential breach of their medical records. Patients must serve as a prominent voice in our national dialogue on health data privacy. The actual solutions will come in many forms, but one thing is abundantly clear — it’s time to act.”  

On Wednesday, July 26, at 11 a.m. Pacific / 2p.m. Eastern, Health Gorilla will be holding a webinar titled “Unveiling the State of Patient Privacy: A Survey of American Consumers”. The webinar will be moderated by Annie Burky, health technology reporter at FierceHealthcare, and panelists include Steven Lane, MD, MPH, Chief Medical Officer of Health Gorilla; Bethany Corbin, JD, Privacy Attorney and Founder of FemInnovation; Grace Cordovano, PhD, Board Certified Patient Advocate and Co-founder of Unblock Health; and Mohammad Jafari, PhD, Community Based Care and Privacy Co-Chair, HL7 andAdjunct Faculty of ASU College of Health Solutions. Sign up for the webinar here.

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