72% of consumers are apprehensive about the potential misuse of their health information by external entities

Study finds that lack of informed consent is the #1 data privacy concern of U.S. consumers in the healthcare system

WARRINGTON, England, Oct. 24, 2023 /PRNewswire/ — Today Cassie, the consent management platform serving Fortune 500 companies globally, unveiled a new research report about consumer’s level of uncertainty with consent and data management within the U.S. healthcare system. Cassie’s new Prescribing Privacy Healthcare Report, which surveyed more than 800 U.S. consumers, found the majority concern for consumers with modern healthcare data practices is the lack of informed consent. Transparency and trust were noted to be a high priority when sharing data for consumers in addition to better patient education surrounding healthcare data privacy practices.

In the age of technology, healthcare providers are facing a critical challenge: gaining the trust of consumers who are increasingly concerned about protecting their data privacy. Notably, Cassie research reveals that 50% of consumers trust tech companies more than healthcare providers to protect their data, underscoring a concerning trend. Data breaches, healthcare mergers and acquisitions and the continued integration of healthtech in patient services are becoming all too common, putting patients’ information at risk. Patients are now raising their expectations and looking for healthcare providers to provide transparency and guidance about their data-handling practices. Cassie research uncovers the steps healthcare providers need to take in order to regain patient trust, including explicit opt-in consent — a practice that 92% believe should be mandatory when sharing health data.

Cassie’s Prescribing Privacy Healthcare Report found:

  • 72% of consumers worry about the potential misuse of their health information by external entities
  • 6 in 10 consumers have apprehensions about electronically sharing their health data due to privacy concerns
  • Consumers rated their healthcare providers 2 out of 5 for compliance with regulations
  • 35% of consumers have experienced a disjointed process with healthcare providers and of those consumers, 8 in 10 noted this caused confusion

“Empowering patients with knowledge on how to keep their data safe can help foster a sense of partnership in data security. It puts control back in the patients’ hands with user-friendly tools to manage their data, permissions and preferences for access and sharing,” said Nicky Watson, co-founder and chief architect of Cassie. “Striking a balance between technological advancement and data privacy is vital for responsible healthcare progress.”

Better Healthcare Services and Patient Care

At the heart of technology’s transformation of patient care is the essential role of personal data. Cassie data shows that an impressive 87% of consumers are willing to share their data, driven by the belief that it will lead to enhanced care. However, ethical and efficient data management requires accurate tracking, storing, and analysis of large amounts of patient information while implementing appropriate security protocols and encryption methods. Cassie research reveals the critical role of trust in this landscape, as 81% of consumers would be more likely to trust a provider that works with a third party to ensure consent management and compliance. When used responsibly and reliably, data can be a pathway to better patient care as understood by the 66% of consumers who believe that the use of personal health data significantly impacts the quality of care they receive.

Apps + Wearables

The use of wearable devices such as smartwatches and health trackers provides a unique opportunity for healthcare providers to build trust and improve patient outcomes. The data reveals that 31% of individuals actively use wearable devices to monitor their health, and 61% are open to sharing this data with healthcare providers. Notably, 91% of those who share data from their wearable devices believe it can lead to more personalized and effective treatment plans. And 8 in 10 of those consumers who withhold their data because of skepticism are still willing to share it if they were given the ability to control who accesses it. In order to tap into the full potential of wearables, healthcare providers must proactively address these trust issues by implementing transparent data-sharing policies that allow patients to have control over their health data.

Shifting Data Privacy And Healthcare Regulations

Within the U.S., there are 13 states that currently offer some aspect of consumer data privacy laws. Variations in different jurisdictions of data protection legislation and definitions of ownership, control, and usage all boil down to one thing: trust. With consumers divulging more information and leaving larger digital footprints, healthcare providers have to respect their privacy and adhere to shifting regulations.

  • 83% of consumers are skeptical of how well government regulations protect their health data
  • 6 in 10 consumers believe that healthcare providers are not keeping up well with new data privacy regulations
  • 90% of consumers say that healthcare providers that invest in data security technology are more reliable than those that don’t, and of those, 43% are looking to switch to a provider that places a stronger emphasis on data privacy protection

The full Cassie Prescribing Privacy Pain Points Report is available for download here.


This survey of 803 adults in the U.S.  was conducted between September 26th, 2023September 29th, 2023. The survey was conducted at 95% confidence, +/- 3% margin of error.

About Cassie

Cassie is a consent and preference management platform that empowers complex, global businesses to deliver compliant, transparent customer marketing experiences. Created by consent and preference management pioneer Syrenis, Cassie specializes in working with companies in high-volume, high-transaction data scenarios to go beyond compliance allowing them to build long-lasting, trusting relationships with their customers. Endorsed by leading analyst Gartner for its exceptional configurability, security and scalability, Cassie foresees and delivers capabilities that enterprise companies need to stay compliant and meet the evolving demands of global data citizens. Cassie’s parent company, Syrenis, was founded in 2000 and has been delivering data software solutions for more than two decades. For more information, visit trustcassie.com.


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