Disability, Age, and Informational Privacy Attitudes in Quality of Life Technology Applications: Results from a National Web Survey
Scott Beach, Richard Schulz, Julie Downs, Judith Matthews, Bruce Barron, Katherine Seelman · 2009 · ACM Transactions on Accessible Computing · doi:10.1145/1525840.1525846
Summary
This landmark study examines privacy attitudes toward assistive and health monitoring technologies among 1,518 U.S. adults, focusing on how disability and age influence willingness to share personal health information. Conducted under the NSF Quality of Life Technology Engineering Research Center (a Carnegie Mellon and University of Pittsburgh partnership), the survey examined acceptability of sharing six types of health-related behaviors (toileting, taking medications, moving about the home, cognitive ability, driving behavior, and vital signs) with five targets (family, healthcare providers, insurance companies, researchers, and government). The study also assessed attitudes toward three recording methods: video with sound, video without sound, and sensors/motion detectors. The sample included baby boomers (ages 45-64) and older adults (65+), with deliberate oversampling of people with disabilities including those with physical disabilities, rheumatoid arthritis, stroke, emphysema, and multiple sclerosis. About 56% reported having a disability, and 27% used assistive devices.
Key findings
Privacy attitudes varied dramatically by information type, recipient, and recording method. Toileting behavior was least acceptable to share or record (mean 5.7 on 10-point scale), while vital signs were most acceptable (mean 7.0). Family members (8.1) and healthcare providers (7.9) were trusted targets, while government (3.8) and insurance companies (6.0) were least acceptable. Sensors/motion detectors (6.5) were preferred over video without sound (5.0) or video with sound (4.8). The critical finding: disabled individuals were significantly more accepting of sharing and recording health information than nondisabled adults across all measures, even after controlling for demographics, technology attitudes, and assistive device use. Moreover, a dose-response effect emerged—people with both ADL and IADL limitations were more accepting than those with only IADL limitations, who were more accepting than those with no disability. Interestingly, actual assistive device use was not predictive of privacy attitudes once disability status was controlled.
Relevance
This study provides essential empirical evidence for designers of assistive technology, smart homes, and health monitoring systems. The finding that people with disabilities are more willing to accept privacy trade-offs challenges assumptions that disabled users need extra privacy protections—instead, they appear to rationally weigh benefits against costs, accepting more surveillance when the potential health benefits are greater. For practitioners, the clear preference for sensors over video cameras suggests design direction: use the least intrusive monitoring method that achieves the goal. The distrust of government and insurance companies as data recipients has implications for policy and system design around data sharing. The study also highlights that toileting-related monitoring requires particular sensitivity in implementation.
Tags: privacy · quality of life technology · smart home · aging · surveillance · assistive technology adoption · user attitudes · health monitoring