1. Consumer Views on Health Applications of Consumer Digital Data and Health Privacy Among US Adults: Qualitative Interview Study
- Author
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Meghana Sharma, Xochitl Luna Marti, Carolyn C. Cannuscio, Abby Dolan, David A. Asch, David Grande, and Raina M. Merchant
- Subjects
digital epidemiology ,Adult ,Male ,medicine.medical_specialty ,020205 medical informatics ,Adolescent ,Computer applications to medicine. Medical informatics ,Digital data ,Internet privacy ,R858-859.7 ,Datasets as Topic ,Health Informatics ,02 engineering and technology ,Cohort Studies ,Interviews as Topic ,03 medical and health sciences ,Young Adult ,0302 clinical medicine ,0202 electrical engineering, electronic engineering, information engineering ,medicine ,Humans ,030212 general & internal medicine ,digital health privacy ,privacy law ,Qualitative Research ,Original Paper ,Data collection ,Consumer Health Information ,business.industry ,Public health ,Data Collection ,health law ,Consumer Behavior ,Middle Aged ,Digital health ,Transparency (behavior) ,health privacy ,United States ,Privacy ,Digital footprint ,Health law ,Female ,Privacy law ,Business ,Public aspects of medicine ,RA1-1270 - 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 This 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. Methods We 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. 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 protection. 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 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.
- Published
- 2021