Consumers are largely unaware of the extent to which their health plans can access data about their online shopping, social media or streaming habits, a new survey shows.
MITRE and The Harris Poll surveyed more than 2,000 adults in June, and found that just 11% believe their health plans have access to what’s known as consumer-generated data, which can be used to build profiles of members to predict their health costs.
This data is separate from protect health data, and tracks things like online activity and social media posts.
Consumers expressed discomfort with their insurer or employer obtaining such data, the poll found. While a majority said it’s fine for their plans (60%) or employer (52%) to use their personal information to create tailored programs, two-thirds said it was unacceptable for these organizations to gather or purchase outside data about them.
Insurers can quite easily obtain this data through a variety of sources, the analysts note, including purchases from “data brokers.”
“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,” said Rob Jekielek, managing director of The Harris Poll, in a statement.
The majority of those surveyed (70%) said they believe that it is important to share their personal health information to track and prevent the spread of disease. However, they had a more mixed response on which data to share and who to share it with.
For example, 59% said they were not comfortable sharing such data with social media platforms, compared to being far more comfortable with doctors, their health plan or medical researchers.
In addition, less than half (44%) said they would be comfortable sharing their personal data with a national database to track COVID-19. Just 36% said they’d be willing to share their temperature and 29% would be comfortable sharing their location. A quarter said they would be willing to disclose any chronic illnesses.
“Americans need more education about the ways third parties are accessing and using their consumer-generated data,” said Erin Williams, executive director and division director for Biomedical Innovation at MITRE, in a statement. “But it really shows that companies have an obligation to be more transparent about what data they are collecting from third parties.”