Health Literacy and Consumer-Facing Technology: Workshop Summary by Joe Alper

Author:Joe Alper
Language: eng
Format: epub
Publisher: The National Academies Press
Published: 2015-11-06T00:00:00+00:00

As Ricciardi and others mentioned, Rein said there is a tremendous appetite on the part of patients and consumers to engage in this space. A report from the PricewaterhouseCoopers Health Research Institute stated that 47 percent of consumers agree that mobile devices can be used more effectively to coordinate care, and that 65 percent of consumers with one or more health apps on their mobile devices use them at least once weekly. Half of the consumers surveyed said they would be likely to use consumer devices to perform self-evaluations and 56 percent said they would be comfortable having their health data shared if doing so would improve care coordination (PricewaterhouseCoopers, 2014). Rein noted that the ONC and the National Partnership for Women and Families each released survey results over the past year that corroborate and extend these findings.

Given the appetite consumers have for eHealth applications, it is important to consider the risks and whether those risks are evenly distributed across all constituents. Loss of privacy is the risk that gets the most attention and it can take two forms: (1) personal identification and blind discrimination, or (2) discrimination by association. As an example of the former, Rein noted how purchasing an item online suddenly seems to trigger a host of related content appearing on other websites. Discrimination by association refers to a characteristic that a person might have that is associated with something else, such as prior incarceration. Another risk is loss of control of one’s own information, and to some extent, this may have happened already. Diminished access to potentially beneficial information or treatment is a risk that is associated with the fact that many vulnerable populations may not get access to care because they cannot purchase an app or device and have to relinquish some level of control in order to gain access to something they believe they need medically. Rein said these risks are not evenly distributed.

There is no comprehensive framework for health information privacy and security, Rein said. Although this has been said many times, it bears repeating, she explained. Societal norms informed by the Hippocratic Oath, together with legal protections afforded by the Health Insurance Portability and Accountability Act (HIPAA), the Genetic Information Nondiscrimination Act (GINA), and the Common Rule, are only in force for data generated by the health system. For patient- and consumer-generated data, there are few protections and many points of potential risk, a situation that Rein characterized as being like the Wild West.

“Given all of this,” said Rein, “I think the question becomes what things are health literacy sensitive? That is, if we apply basic health literacy concepts and practices, could we reasonably expect consumers to take some different action? Conversely, are there things that are so complex or so opaque or where there is no transparency that it is just really too much to expect that consumers would be able to engage or interact in that way?” Consumer use of mobile apps provides one example of something that is potentially health literacy sensitive.

Download

Copyright Disclaimer:
This site does not store any files on its server. We only index and link to content provided by other sites. Please contact the content providers to delete copyright contents if any and email us, we'll remove relevant links or contents immediately.