Abstract
BackgroundIn 2020, the number of internet users surpassed 4.6 billion. Individuals who create and share digital data can leave a trail of information about their habits and preferences that collectively generate a digital footprint. Studies have shown that digital footprints can reveal important information regarding an individual’s health status, ranging from diet and exercise to depression. Uses of digital applications have accelerated during the COVID-19 pandemic where public health organizations have utilized technology to reduce the burden of transmission, ultimately leading to policy discussions about digital health privacy. Though US consumers report feeling concerned about the way their personal data is used, they continue to use digital technologies.ObjectiveThis study aimed to understand the extent to which consumers recognize possible health applications of their digital data and identify their most salient concerns around digital health privacy.MethodsWe conducted semistructured interviews with a diverse national sample of US adults from November 2018 to January 2019. Participants were recruited from the Ipsos KnowledgePanel, a nationally representative panel. Participants were asked to reflect on their own use of digital technology, rate various sources of digital information, and consider several hypothetical scenarios with varying sources and health-related applications of personal digital information.ResultsThe final cohort included a diverse national sample of 45 US consumers. Participants were generally unaware what consumer digital data might reveal about their health. They also revealed limited knowledge of current data collection and aggregation practices. When responding to specific scenarios with health-related applications of data, they had difficulty weighing the benefits and harms but expressed a desire for privacy protection. They saw benefits in using digital data to improve health, but wanted limits to health programs’ use of consumer digital data.ConclusionsCurrent privacy restrictions on health-related data are premised on the notion that these data are derived only from medical encounters. Given that an increasing amount of health-related data is derived from digital footprints in consumer settings, our findings suggest the need for greater transparency of data collection and uses, and broader health privacy protections.
Highlights
MethodsIn 2020, internet users spent 1.25 billion years online
Data from social media sites, including Twitter and Facebook, can be used to screen for signs of depression, suicidal ideation, and sleep disorders based on user activity and language patterns [3,4,5,6]
We interviewed a diverse sample of American consumers to evaluate their awareness of the health applications of their digital data and identify their privacy views and concerns
Summary
MethodsIn 2020, internet users spent 1.25 billion years online. The average internet user spends 6 hours and 43 minutes online each day [1], leaving a trail of information about his/her habits and preferences that collectively generates a digital footprint.A consumer’s digital footprint can reveal health-related behaviors, such as diet and physical activity, that can predict health [2]. Data from social media sites, including Twitter and Facebook, can be used to screen for signs of depression, suicidal ideation, and sleep disorders based on user activity and language patterns [3,4,5,6] These applications of data toward health purposes erase past distinctions between health and nonhealth data [7,8]. Apple and Google have updated their smartphone operating systems to enable tracking of human-to-human interactions to enable digital contact tracing [12] These public health applications of consumer digital data have triggered global debates and urgent policy discussions about digital health privacy [13]. Given that an increasing amount of health-related data is derived from digital footprints in consumer settings, our findings suggest the need for greater transparency of data collection and uses, and broader health privacy protections
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