Assuring the privacy of personal health information is a key component of developing the demand for online resources among consumers. More than half of respondents to one survey said they were very concerned about their information falling into the hands of employers or health insurers. One expert explained that even though surveys have found concern about privacy among users, individuals may underestimate the risks that could be involved, particularly, in his perspective, from PHR sites maintained by private companies rather than by providers. Concerns about having health information stored online may be even higher among underserved minority populations. One focus group study found that such individuals might prefer to carry a “smart card” with health data rather than entering it online.
Privacy concerns and related legal issues may also limit the take-up of some applications among providers—for example, it may make them reluctant or unwilling to release test results or may stop them from communicating with patients via email if a secure messaging system is unavailable.
It is unclear the extent to which privacy concerns will continue to be a barrier for consumers. As one interviewee pointed out, two items that individuals like to keep private are health and finances. Many have overcome their concerns about finances and engage in online banking; could storing health information online similarly become less threatening over time? Research suggests that a smaller percentage of individuals (39%) who have a long history of going online experience high levels of concern about making online purchases, compared to new users (55%).
A thorough discussion of the policy options for addressing these privacy concerns is beyond the scope of this paper. One interviewee summarized two policy approaches—legislation mandating vendors’ responsibilities in following provisions like those in the Health Insurance Portability and Accountability Act; or a self-regulatory system with voluntary certification of privacy policies.
For consumers to use health tools they must be confident not only that their privacy will be maintained, but also that they will be using tools that are accurate and safe. Purchasing drugs online, for example, may take some time to gain traction because a 2004 survey found that only one in five Americans think such purchases are equally safe as in-person ones. Another study found a similar share (19%) of respondents said they trust health information a lot. This trust of online information varies by demographic characteristics; people with more education and higher incomes are more likely to trust it and individuals age 80 or older are particularly unlikely to express that type of confidence. (For context, a survey about general internet use found that 55% of internet users believe that most or all of the information on the internet is reliable and accurate, while less than 40% of non-users feel that way.)
Providers may also resist recommending online tools if they are uncertain of the quality of the information available online. Indeed one researcher suggested that the quality barrier may be more of an issue for health professionals than it is for consumers. It may be particularly difficult for providers to verify the accuracy of information in more complex tools. For example, because the underlying logic in decision support aids may not be transparent, it might not be possible for a doctor to determine if the site will provide the user with appropriate guidance. Also, one provider mentioned that concern over false information has thus far prevented his organization from including a non-moderated chat or discussion group feature that would connect patients to each other. He explained that information on a provider portal would be held to a higher threshold of accuracy than chat groups that operate on commercial sites, because consumers might have higher expectations about materials they access through their providers.
Additionally, individuals must find using health IT to be compelling. Our experts described some characteristics of consumer health IT that could increase its value in the eyes of users. Convenience and ease of use are key. This could involve reducing the amount of information a user must enter into a PHR, or enabling people to use mobile phones and PDAs. Also, several experts expressed that applications need to be consumer-centered and provide information or services tailored to individuals. Helping individuals access the information and tools that are most appropriate for them individually may prevent the confusion that can come from exposure to an “information glut.”