As an increasing number of patients and providers flock to health social networking sites to share information and connect with similar individuals, privacy remains a paramount concern. To that end, a comprehensive privacy framework is vital for such environments, according to research published this week in the Journal of the American Medical Informatics Association.
"Empirical and theoretical research suggest that users often lack enough information to make privacy-sensitive decisions and, even with sufficient information, are likely to trade-off long-term privacy for short-term benefits," says author Jingquan Li, an associate professor of computer information systems with the Texas A&M University-San Antonio's school of business. "Users' online practices are also constrained by their degree of digital literacy and by the technical design of the website, which may impede easy management of settings and consent regarding the use and disclosure of personal data."
Li outlines several concerns to be considered in the creation of such a framework. For instance, he says, users need to be fully engaged in protecting their own privacy when using such sites. "It is critical to understand the privacy settings available within each of these sites and to apply the maximum level of privacy available," he says. "However, settings may change without prior notification, be difficult to fully implement, and ultimately will not change the content other members can access. Users should also closely monitor how data flows on the website because the context surrounding health data or the technology may be dynamic."
Another concern, according to Li, centers on how to ensure accountability for non-medical uses of data shared. "In the event that individuals and entities violate users' privacy, new legislation, if not the HIPAA/HITECH Act, is needed to protect the privacy of online health data," he says. "The legislation should mandate that the provider must give individuals options to control how their health data are used for non-medical purposes. The legislation should further prohibit inappropriate commercial uses resulting, for example, in discrimination, even with express consent."
Research published last month in PLOS Medicine concluded that while online social networks have been used for regulating personal health and for research, ethical oversight is necessary for continued health research that will make an impact.
Despite all of the skepticism, in an interview with FierceHealthIT in February, Eric Topol said that social networking will be extremely important to healthcare's future.
"This is an important way people are sharing information and learning about their conditions from virtual peers," Topol said. "Now that we're getting people armed with their data, we can start to apply these sorts of things to chronic illnesses."
To learn more:
- here's the JAMIA post