Accepted for/Published in: Journal of Medical Internet Research
Date Submitted: Apr 5, 2021
Date Accepted: May 16, 2021
Consumer views on health applications of consumer digital data and health privacy: A qualitative interview study of US adults
ABSTRACT
Background:
In 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.
Objective:
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.
Methods:
We conducted semi-structured interviews with a diverse, national sample of US adults from November 2018-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.
Results:
The 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 protections. They saw benefits in using digital data to improve health, but wanted limits to health programs’ use of consumer digital data.
Conclusions:
Current privacy restrictions on health-related data are premised on the notion that these data derive only from medical encounters. Given that an increasing amount of health-related data derive from digital footprints in consumer settings, our findings point to suggest the need for greater transparency of data collection and uses and broader health privacy protections
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