Privacy, Storage, and Usage: How Older Adults View Big Data in Health Care

A recent survey on big health data shows that older adults lack knowledge about how much personal data is collected, analyzed, and shared. Most are concerned about the sharing of personal data and when thinking about big health data specifically, most say concerns outweigh possible benefits.

We are in the middle of a data collection and usage revolution. While many argue that more data is useful and making data accessible to a wider array of entities may yield important results, some point out potential hazards, especially related to the handling of medical data.

Medical offices collect health-related data, but so do a variety of devices, websites, and applications. These big health data are being generated, collected, analyzed, shared, and sold with little or no regulation or oversight — and certainly without the consumers’ knowledge.

• Though the vast majority of older adults ages 50-plus are not aware of the term "big health data," many are concerned about how companies use the data that they collect.
• A majority (67%) are concerned about how companies are using the data they collect.
• Nearly three in five (58%) say they are concerned that their medical records are being shared with someone other than their healthcare providers.
•  Of those who use apps/websites that collect medical or health-related information, more than half (53%) say they are concerned their health-related data is being sold.
• Seven in 10 (69%) say they would be concerned if the government collected and analyzed their health data, and 66% would be concerned if insurance companies and/or financial companies collected and/or analyzed their health data.

When provided with a definition of big health data, more than half (57%) say the potential risks of companies collecting data outweigh the possible benefits, while less than a third (29%) feel the benefits would outweigh the potential risks. More than seven in 10 older adults say they are concerned that the use of big health data may negatively affect individuals on a personal level, for example, by limiting their access to insurance (78%) or companies using their data without their consent (75%).

However, more than half say they are concerned that restricting the use of big health data may negatively affect national healthcare management, for example, by preventing the development of better ways to avert outbreaks (59%) or inhibiting the development of cost effective treatments (56%). 

Health care providers and policymakers must ensure that policies regarding data collection and usage are transparent. Older adults demand easy-to-understand information that enables them to make informed decisions about how their personal health data is collected and used.

Methodology

The AARP Big Health Data survey was conducted via telephone (37% cell phone) by American Directions Group with sample targeting people ages 50 or older. The sample of 800 included an oversample of African American and Hispanic/Latino respondents. The interviews were conducted in English and Spanish, February 4–25, 2020. 

For more information, please contact Cheryl Lampkin at clampkin@aarp.org. For media inquiries, contact AARP’s Media Relations Office at media@aarp.org.