Poll Reveals Consumers Do Not Know the Extent of the Collection and Use of Consumer-Generated Data by Insurance Providers

Health insurance providers are gathering online information about customers and using the details to estimate a person’s likely medical care expenses. Consumer-generated information is gathered and employed to make profiles, which may be employed to find out best-suited premiums.

Consumer-generated information is different from protected health information (PHI) and pertains to a person’s standard of living, interests, and attitude and arise from varied private and public sources. Health insurance providers may search online resources for data or get information from data brokers. Certain data brokers are actively selling their data to insurance providers and assert the data contains social determinants of wellness, like online shopping practices, subscriptions to organizations, TV streaming patterns, and data published on social networks. Data are blended and algorithms could be employed to forecast the probable cost of offering insurance.

ProPublica in 2018 highlighted what health insurance providers and their business associates do with consumer-generated data. The general public is generally uninformed about the extent of collecting and using data.

MITRE recently mandated a Harris Poll to look into the attitude towards the usage of consumer-generated information. The Harris Poll was performed in June 2020 and 2,065 people in the US participated.

The Harris Poll showed that consumers are mostly uninformed of the magnitude to which their data is being gathered and used, and the kinds of data that health insurance providers and employers might be aware of people. 89% of poll participants thought health insurance providers don’t know their online shopping and streaming practices when this data is being gathered and utilized.

Most of the respondents consider the usage of personal information by employers and health insurance providers acceptable, although just for particular reasons. 60% of poll participants considered it acceptable for their insurance provider to make use of personal information to create health campaign activities, with 54% thinking it to be okay for companies to do the same. But, 66% of poll participants stated it wasn’t acceptable for a company or health insurance provider to collect or buy outside data about their workers or health plan members.

The results of the poll show a substantial gap between what people think insurance providers and companies know about their personal information and what they in fact do. Americans must be educated more with regards to the ways third parties are obtaining and utilizing their consumer-generated information. Companies have a responsibility to let consumers know about the data they collect from third parties.

There is already a wide acceptance of lax digital privacy in today’s community. 77% of poll participants stated that there is no data privacy. Participants to the Harris Poll stated they were ready to give their personal data if they get something in exchange, for instance, better security (65%) or convenience (48%).

Although 70% of participants think that sharing personal health data to prevent the spread of disease is a responsibility, the same participants seemed unwilling to disclose their personal information for that reason. When asked in case personal data would be included in a nationwide database to address the spread of COVID-19, merely 44% of participants stated they’re willing to disclose their personal data. 36% stated they will disclose their temperature data, 29% would disclose their location, and just 25% would disclose details concerning chronic illnesses.

In relation to sharing data, there is skepticism of social communities. 59% of participants stated they are not comfortable with disclosing any PHI with a social media platform, though consumers may still disclose health data through those networks.

Companies may have good-hearted intentions and use the data in productive things that eventually benefit the health of consumers. However, consumers could be hurt when information is used wrongly or unethically.

MITRE has created an Ethical Framework for Using Consumer-Generated Data in Health Care which sets ethical values, guidelines, and recommendations to assist in the usage of consumer-generated information for healthcare reasons.

The framework is meant to guide companies seeking to establish policies that promote the ethical usage of consumer-generated information for healthcare reasons and to propel companies to talk about the ethical risks of utilizing machine learning systems to evaluate consumer-generated information and create suitable governance processes to support the ethical usage of those systems.

Download the framework from MITRE here.