Patients Vastly Unaware of Insurers’ Access to Online Health Data

Just one in 10 American patients believe health insurance companies have access to their personal spending and streaming habits, although reports have shown insurers routinely search private and public sources for consumer-generated health data, according to a recent MITRE-Harris Poll survey. 

Reports from ProPublica and Politico have highlighted the common practice used to help insurers build customer profiles and predict potential healthcare costs of consumers. Insurance companies will review lifestyle or behavior data pulled from purchasing, membership, or online activity, according to the recent MITRE report. 

In response, researchers from MITRE and the Harris Poll conducted an online survey of 2,065 US adults in June, to assess potential privacy issues and consumer concerns about these practices.  

About 60 percent believe the practice is acceptable for their insurer and 52 percent said it was acceptable for their employer, if the personal data reviewed by these entities were designed to tailor health promotion activities to the member or employee. 

But the majority (about 66 percent) said it was completely unacceptable for health insurers or employers to collect or purchase outside information about members or employees based on social media activity or binge-watching habits. 

Collectively, consumers want to have control over the parties with which their personal data is shared. However, many are willing to exchange some of that personal privacy in exchange for safety (65 percent) and convenience (48 percent). 

The age of the respondent and geographic location contributed to these viewpoints, with 61 percent of Gen Z consumers, 52 percent of Millennials, 54 percent of Gen X, and 57 percent of urbanites responding they’d trade privacy for convenience. 

Notably, 56 percent of men are more likely than their counterparts to willingly trade their privacy for convenience sake. 

“There are clear gaps in attitudes towards, and understanding of, lifestyle data privacy and its use by industry — this trend is also particularly noteworthy when looking at differences based on ethnicity, where the research shows 10% to 20% gaps between white, Black, and Hispanic Americans,” Rob Jekielek, managing director of The Harris Poll, said in a statement. 

In fact, 77 percent of respondents said they don’t believe any data privacy exists in today’s landscape, with predominantly more respondents saying data privacy is a thing of the past: Gen X (79 percent), Boomers (83 percent), and Seniors (89 percent). 

For comparison, that viewpoint was shared by 61 percent of Gen Z, 52 percent of Millennials, and 61 percent of Gen Z. 

Despite these viewpoints, 70 percent of respondents believe there’s an obligation to share personal health information to stop the spread of disease. But those numbers are drastically reduced when respondents were asked about sharing personal information to a national database to stop the spread of COVID-19. 

Just 36 percent of respondents would be willing to share their temperature, only 29 percent would be willing to share their location, and 25 percent would disclose chronic illness in this manner. 

The data is concerning as industry stakeholders have stressed that the key to an effective COVID-19 contact tracing app is a willingness of consumers to trust those platforms – and the entity running the app – with their health information. 

Under HIPAA, apps generated from outside of the healthcare setting may not be covered by HIPAA regulations – especially if the third-party app is chosen by the patient and does not have an affiliation with their healthcare provider. The Office for Civil Rights recently updated its HIPAA health app resource to address these issues and answer mHealth developers’ common questions about these tools. 

“These results reinforce that a significant gap exists between what we believe our insurance companies and employers know about us personally, and what they actually do,” said Erin Williams, executive director and division director for MITRE Biomedical Innovation, in a statement. 

“Americans need more education about the ways third parties are accessing and using their consumer-generated data,” she added. “But it really shows that companies have an obligation to be more transparent about what data they are collecting from third parties.”