Despite concerns, most Americans are willing to share health data in some cases, survey finds

Most Americans are concerned with how their health data is shared but have never discussed how it is used, a recent survey found.

Q-Centrix, a clinical data management company, conducted its first Health Care Data Sharing Survey in December 2021, reaching 1,191 Americans. The sample is representative of the U.S. adult online population, according to the company. 

It found that most Americans are concerned about their personal data being shared. However, a greater portion interprets personal data as being names or addresses, with only about half interpreting personal data as health information. Nonetheless, most are very or somewhat concerned with how health information is being shared. 

“Hospitals have an opportunity to educate their patients on how they ensure their data is accurate, and why that is important for improving outcomes,” Brian Foy, chief product officer at Q-Centrix, said in a statement. “This not only requires clinician transparency but also the implementation of modern data solutions throughout hospitals and health systems to maintain data quality and security.”

Despite respondents’ concerns, most (71%) are open to sharing de-identified health data for various reasons, including to improve their own or other patients’ healthcare, for research, to improve hospital services or to advance equity. The entities with which they would feel comfortable sharing include providers and pharmacies that have treated them directly. When it comes to whether they feel comfortable sharing with providers and pharmacies that have not treated them or insurance companies, more respondents said no than yes.

About half of respondents believe the data in their electronic medical record is accurate, with more than a third being unsure. More than a third believe organizations are not doing everything possible to ensure their data is protected. 

“We have a pretty good sense of how hospitals and health systems feel about data and interoperability,” Foy told Fierce Healthcare, but “you don’t — and we don’t — come across, very often, data around how individual consumers feel about healthcare data.” Bridging whatever knowledge gap may exist among patients is critical to the future of healthcare, Q-Centrix believes. This data contains insights that could improve care and representation in research and clinical trials. 

Foy suspects that patients intuitively understand their health data is not being misused, which could explain why so many indicated some willingness to share it. A big difference between health data and data that is collected by big tech, for instance, is whether that data is then used to target ads to a user. In order to combat potential misconceptions, healthcare organizations would need a multi-pronged approach, including changing the way they talk about patient data in their marketing and communicate to patients their need for this data, Foy suggested.